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Impact of PHRs

1. D Brailer Jan 2005 Interoperability The Key To The Future Health Care System Health Affairs Retrieved March 29 2009 from http content healthaffairs org cgi content full hlthaff w5 19 DC1 37 22 23 24 25 26 27 28 29 30 31 32 M Catz Feb 2004 Health IT Why Should We Care Presentation George Brown College Health Informatics Symposium Retrieved March 28 2009 from http www georgebrown ca News HealthInformatics Mariana ppt N Ferris Jun 2008 Feud erupts over forecasts of health IT s long term costs Government Health IT Retrieved March 29 2009 from http govhealthit com articles 2008 06 feud erupts over forecasts of health its longterm costs aspx N Ferris Sep 2005 Rand pegs health IT savings at 81B a year Government Health IT Retrieved March 29 2009 from http govhealthit com articles 2005 09 rand pegs health it savings at 81b a year aspx N Ferris Jul 2008 Nationwide EHR implementation price tag estimated at 150 billion Government Health IT Retrieved March 29 2009 from http govhealthit com articles 2008 07 nationwide ehr implementation price tag estimated at 150 billion aspx N Ferris Mar 2009 Gold rush on for health IT pioneers Government Health IT Retrieved March 29 2009 from http www govhealthit com Articles 2009 03 1 1 Gold rush for health IT pioneers aspx Congressional Budget Office Jan 2009 Cost Estimate for
2. 50 E Schonfeld May 2008 Google Health A Quick Hands On Look The Washington Post Retrieved September 23 2008 from http www washingtonpost com wp dyn content article 2008 05 19 ar2008051901894 pf html 51 A DeArment Jun 2008 Google Health launches medical information management Drug Store News 30 7 60 68 Retrieved April 13 2009 from http search ebscohost com login aspx direct true amp db buh amp AN 32800397 amp site ehost live 52 Google 2008 Google Health Data API Google Code Retrieved October 8 2008 from http code google com apis health 40 53 D Green and A DiCaterino 1998 A Survey of System Development Process Models Center for Technology in Government University at Albany SUNY Retrieved April 4 2009 from http www ctg albany edu publications reports survey of sysdev survey of sysdev pdf 54 A Dennis B Wixom and D Tegarden 2009 Systems Analysis and Design with UML Version 2 0 An Object Oriented Approach Third Edition New Jersey John Wiley amp Sons Retrieved April 13 2009 from http common books24x7 com book id_29675 book asp 55 R Kay May 2002 QuickStudy System Development Life Cycle Computerworld Retrieved April 4 2009 from http www computerworld com developmenttopics development story 0 10801 71151 00 h tml 56 W Maner Mar 1997 Rapid Application Development BGSU Computer Science Walter Maner Retrieved April
3. Finally when the application exits the connection to Google Health is automatically severed 26 lt lt User gt gt lt lt Server gt gt InfantCare PHR GoogleHealth 1 i 1 loging 2 Connect 3 setUserCredentials 4 getRecordsi 5 profileListFeed 6 updateInFormation 7 deleteEntry 8 insertEntry 9 exit Figure 1 Sequence of Communication within the InfantCare PHR Application In order to work easily with the data we made another major decision We decided that the GUI would be able to deal in a different set of abstractions from those used when storing the data on the Google Health server To make this work the system has to be able to convert between different levels of abstractions about the nature of the data see Figure 2 Any data sent to the GUI by the user is first wrapped into a Datum by the GUI the GUI then sends the Datum 27 to the Connector The Connector then converts the Datum into a notice that can be stored by Google Health and sends it off Data is retrieved in the opposite order The notice is retrieved from the Google Health API It is then converted into a datum by Connector The Datum is then sent up to the GUI which then unpacks the Datum to get the useful data Display data Login Enter Data GoogleHeath AP API Get notice Post notice C tirtcarecu gt GUI cc datum exce datum Figure 2 Information Flow of the InfantC
4. 3 2009 from http www cs bgsu edu maner domains RAD htm 0 57 REACH Foundation Frequently Asked Questions REACH Program Retrieved October 8 2008 from http www reachfoundation net faq html 58 W M K Trochim Oct 2006 Selecting the Survey Method Social Research Methods Retrieved March 22 2009 from http www socialresearchmethods net kb survsel php 59 W M K Trochim Oct 2006 Types of Surveys Social Research Methods Retrieved March 22 2009 from http www socialresearchmethods net kb survtype php 60 Ipathia Inc Mar 2005 Survey Questions SuperSurvey Knowledge Base Retrieved April 3 2009 from http knowledge base supersurvey com survey questions htm 61 M Curtin Apr 1998 Write Once Run Anywhere Why It Matters Interhack Retrieved April 4 2009 from http www interhack net people cmcurtin rants write once run anywhere write once run anywhere pdf 62 Google 2007 Package com google gdata health Google Data APIs Client Library Retrieved December 10 2008 from http code google com apis gdata javadoc com google gdata data health package summary html 63 Google Health 2008 Developer s Guide Java 1 5 Google Health Data API Retrieved December 10 2008 from code google com apis health docs 2 0 developers_guide_java html 64 E Bidelman Mar 2009 Date of Birth no longer sent in CCR Google Health Developers Google Group Retrieved March 24 2009 from http groups google com
5. H R 1 American Recovery and Reinvestment Act of 2009 Congressional Budget Office Retrieved March 28 2009 from http www cbo gov ftpdocs 99xx doc9968 hr1 pdf T Wyatt and E Hauenstein 2008 Enhancing Children s Health Through Digital Story CIN Computers Informatics Nursing 28 3 142 148 Retrieved March 30 2009 from http www nursingcenter com pdf asp AID 788949 P Chen Jan 2009 Doctor and Patient Building a Healthy Community One Child at a Time The New York Times Retrieved March 30 2009 from http www nytimes com 2009 01 23 health 22chen html r 4 C Schoen and C Desroches Dec 1998 Financing Children s Health Care Needs In The Next Century Journal of Urban Health 75 4 639 659 Retrieved March 30 2009 from http www springerlink com content m04817101621p751 fulltext pdf C E George Ezzelle and Y Hsu 2006 GED Candidate Computer Familiarity Survey GED Testing Service Research Studies GED Testing Service of the American Council on Education Retrieved April 13 2009 from http www acenet edu Content NavigationMenu ged pubs GEDCandidate pdf B Raymond Apr 2007 Realizing the Transformative Potential of Personal Health Records In Focus 1 Retrieved October 6 2008 from http www kpihp org publications docs phr_infocus pdf 38 33 AMIA Sep 2006 The Transformative Potential of Integrated Personal Health Records White Paper AMIA Retrieved April 13 2009 from http www2 amia org go
6. activity data over time button Select the date of the first record to chart in the box labeled From Select the date of the last record to chart in the box labeled To Select the type of record Sleeping or Feeding Press the Build Chart button to display the chart fo ee 69 Daily Notes The daily notes screen is used to store notes about diapers feeding sleeping and miscellaneous other notes To open it select the Daily Notes tab at the top of the screen For technical reasons notes cannot contain the symbols and l Also any indents new lines and multiple spaces between any two words are converted to a single space when saved 70 Posting a New Set of Daily Notes LITETEENENEENARR Lox Diaper Notes Feeding Notes 2 Sleeping Notes 3 Miscellaneous Notes 4 Save new notes meu mij 5 zl save 6 Display notes stored For this date Display Edit currently displayed notes Delete currently displayed notes Show all notes of this type Show Enter any diaper notes into the Diaper Notes Enter any feeding notes into the Feeding Notes Enter any sleeping notes into the Sleeping Notes Enter any miscellaneous notes into the Miscellaneous Notes In the Save new Notes under This Date area select the date for which this data applies The fields going left to right are month date and year Press the Save button eS e e 71 Viewing an Existing S
7. chart Show all data of this type Show 1 Enter the number of wet diapers that your child had in the box labeled Wet diaper count 2 Enter the number of soiled diapers that your child had in the box labeled Soiled diaper count 3 Inthe Feeding Times columns check off the boxes next to the hours during which your child was fed 4 Inthe Sleeping times check off the times next to the times during which your child slept 5 Inthe Save new Chart under This Date area select the date for which this data applies The fields going left to right are month date and year 6 Press the Save button to have the data recorded 64 Viewing an Existing Daily Activity lll Main Screen t Bl ini xi Daly Notes Growth Table Immunizations EXIT ey Il L LI LI LI E LI LI LI Bj LI LI LI im m im m m m m m m m m m im m im m m im m m m m m m m m mimm mmmmmimium mi m mj 11 2 2006 3 2 2012 3 2 2012 es 1 Select the date of the record in the Display chart for this date drop down 2 Press the Display button to load the data into the screen 65 Editing an Existing Daily Activity Main Screen LI L Vv LI LI Iv LI LJ LI LI LI LI CE U U U U lt U T E G HI CE U U G U a eee CE U U G U lt U E E a E Ei i 1 Select the date of the record in the Display chart for this date drop down 2 Press the D
8. common types of records to be stored those mentioned were height weight head circumference immunizations and feeding information From survey questions about what type of records and information representation methods the subjects were familiar with it appears that our potential users most often use simple notes or a notebook to keep track of records sometimes only keeping mental notes and the most 24 common structuring of data was in the form of basic tables charts or spreadsheets In some cases the importance of the flexibility of keeping free form notes was stressed indicating that a rigid structuring of records should not be enforced in all cases It has also been noted that some potential application features that would be an improvement over conventional note and record taking are the ability to aggregate certain types of data and display their change over time as well as some type of checking for data that is abnormal or likely to be erroneous To summarize the survey results the most important non functional requirements to aim for in our implementation are usability security and portability The most important and basic functional requirements to meet are the ability to store and retrieve records of the previously given types as well as free form text notes and to be able to represent them in some way that is easy to interpret and manipulate Of course additional nonessential features are also available for consider
9. copy of our application with any appropriate usage instructions and an evaluation form The anticipated starting date for this study when the evaluation materials will be made available is March 30 The study will last for a maximum of eight weeks following the start date during which time you may test the application and complete the evaluation before returning your responses to us Completing the evaluation should not take more than 30 minutes once you have taken as much time as you feel appropriate to test the application To avoid concerns about the security of digital information we request that you return your evaluations in print form so as to ensure the confidentiality of your personal identifying information 35 Risks to study participants There are no apparent risks associated with this study The only foreseeable cause for your discomfort in this study would be answering a question that makes you uncomfortable You may choose not to answer any question that makes you uncomfortable Benefits to research participants and others There is no direct benefit to you as a result of this study Record keeping and confidentiality Records of your participation in this study will be held confidential so far as permitted by law However the study investigators and under certain circumstances the Worcester Polytechnic Institute Institutional Review Board WPI IRB will be able to inspect and have access to confidential data that identify y
10. displayed notes Delete currently displayed notes 3 Show all notes of this type Show 1 Select the date of the record in the Display notes stored for this date drop down 2 Press the Display button to bring up the data and confirm that this is the data that you wish to delete 3 Press the Delete currently displayed notes button to delete the data 74 Examining all Daily Notes Data by Type Main Screen DIAPER NOTE HERE FEEDING NOTE HERE SLEEPING NOTE 4 MISC NOTE sf m ho oos z Depay Edt curently displayed notes Delete currently displayed notes 1m 1 Select the data type in the Show all data of this type dropdown 2 Press Show to have the data pop up in a new window 75 Growth Table The growth table allows you to track your baby s growth with time To reach the screen select the Growth Table tab at the top of the window Posting a New Table Entry L Main Screen 10 x Daily Activities Daily Notes Growth Table Immunizations 1 4 2008 247 0 12 0 45 0 6 12 2017 360 0 1 0 46 0 32 0 Date 1 x Height in Weight Ibs Head Circumference in lo B 4 guess anew entry Edit selected entry Delete selected entry 76 1 Enter the date of the measurement into the field labeled date in the order going left to right month date and year Enter the height of the child in the field labeled Height Enter the w
11. functionality that we could add A common suggestion from respondents was a function to calculate the total time a child sleeps over the course of a day Another was the ability to compare the child s size and growth rate with average values An additional one was that we should display aggregate data over the course of a week or month about daily activities A final 3l suggestion was that we should add in a field to store the total amount of food that the child consumed over the course of a day 32 5 Conclusions and Recommendations Based on our observations gained in completing this project and the results of our application evaluation we can attempt to draw some conclusions First we will consider usability the characteristic determined to be one of the most important from our literature review in Chapter 2 From the part of our evaluation Appendix F based on the System Usability Scale 65 our application received a calculated score of 69 out of 100 Furthermore multiple evaluation participants commented that the application was generally good in terms of its usability such as allowing the user to easily view and manipulate information From this we can conclude that while there may certainly be room for improvement our application s user interface style seems to be a step in the right direction for such applications in terms of satisfying core usability requirements It would appear that in regard to our observation from Chapt
12. the REACH Program for child development as the primary base of potential users we would invite to participate Members of the REACH Program are families with children who range in age from newborn to 3 years old which means they fit our target 17 demographic of caregivers of infants 57 In addition to these program members participants in our research would potentially include personal contacts that fit the demographic and accepted our invitation see Appendix A to participate Given our information gathering needs i e minimal cost to all parties involved in terms of time and effort as well as the ability to potentially accommodate any number of participants large or small we decided it would be best to use a simple questionnaire survey format 58 59 Because this research was both exploratory in that we were looking for fresh input from potential users as well as confirmatory in that we hoped research participants would also confirm some results of our background literature review we decided we would use both quantitative and qualitative questions in our survey see Appendix C 60 3 2 Design of the InfantCare PHR Application With the requirements we would derive from our survey results we would go on to produce a general design for our application prototype Since we chose to make use of Google Health as a result of our research we chose to use Java to code our application as there is an available Java interface to use
13. with Google Health This also addresses the issue of portability as Java is designed for maximum portability and cross platform compatibility 61 We also decided to make our application a simple stand alone program requiring no installation itself It would be usable in any environment with Java installed and an available internet connection The application interface was to be simple intuitive and easy to use Data was to be represented using tables charts and text boxes with tabs used to navigate between screens for different types of data As for security and data protection our application would not 18 permanently store any information locally All information would be stored in the user s Google Health account protected by Google s password authentication Any user comfortable with storing personal information with Google Health should be just as comfortable using our application to store information using their Google Health account As for features our application was to implement the basic necessary features of storing and retrieving the most common and useful types of records kept for infants It would also to be able to store notes associated with the different types of data as well as miscellaneous notes to keep track of any additional information desired by the user We also planned to implement extra features such as data aggregation and visual representations such as graphs and calendars if time allowed The arc
14. Application cte erede se er eco ed ep puc ones Figure 5 Data Modelo the Datums rrr ais tees viii List of Tables Table 1 Summary of PHR Applications 1X 1 Introduction Our project focuses on systems storing Personal Health Records PHR These are systems for users to manage their health records and share them with their doctors The main purpose of PHRs is to empower healthcare consumers allowing them to easily and efficiently manage their own health and health records 1 This is different from most information technologies concerned with health records which are designed for use by clinicians 2 PHR systems create a great opportunity for the patient to be in control of his her own medical records 3 Because they are a new technology they are open for growth and improvement 4 The importance of PHRs has become ever more widely recognized in recent years 5 It may be the case that at this point in time the advancement of PHRs is and has been driven by the healthcare industry rather than those who would most benefit from the technology consumers 4 Regardless this advancement has been ongoing and will certainly continue into the future especially in the current political environment 6 However because PHR technology is still largely in its infancy with even a set of standards yet to be fully developed and adopted there is again wide room for progress and improvement 7 Consequently within the topic
15. Consumer Centric Personal Health Record It s Time Journal of Healthcare Information Management 21 1 20 23 Retrieved October 7 2008 from http 64 233 179 104 scholar hl en amp lr amp q cache hm5_cFpCtTYJ www himss org asp E xternalLinksRedirector asp 3FContentID 3D66475 26ExternalURL 3D 252Fconten t 252Ffiles 252Fyhim 252F2 1 1 252F06_column_Tech pdf phr appeal Medicare Jan 2009 Personal Health Records Medicare Retrieved April 1 2009 from http www medicare gov PHR LearnMoreAboutPHR asp K Sun Jan 2001 Development of a Model and Comparison of Personal Health Record and Related Health Sites University of Victoria Retrieved October 7 2008 from http www informatics review com thoughts ksun html 36 11 C S Miller Get Organized Pregnancy Today Retrieved April 2 2009 from http www pregnancytoday com articles newborn care get organized 191 9 12 National Center for Health Statistics Mar 2009 Births Preliminary Data for 2007 National Vital Statistics Resports Retrieved April 13 2009 from http www cdc gov nchs data nvsr nvsr57 nvsr57 12 pdf 13 S Zeger May 2007 Q amp A Health Informatics Retrieved March 29 2009 from http www jhsph edu publichealthnews articles 2007 healthinformatics html 14 M Bansal Jul 2003 Medical informatics A promising future Express Healthcare Management Retrieved March 29 2009 from http www expresshealthcaremgmt com 2003073 1 ithealthcare4 shtm
16. HR can take various forms including written notes or digital files or some combination thereof It may contain any set of health related information that the creator or maintainer of the record desires to keep It may also be used for any of various purposes such as helping an individual keep track of their own healthcare history or manage an ongoing condition or keep records on another individual in their care 32 However the focus of this project is on electronic PHRs which can be classified somewhat more formally There are three overall types of electronic PHR 33 1 the free standing PHR which is not linked to any outside data sources and functions only as a private record populated with data provided by the record s maintainer all written record PHRs are inherently free standing 2 the interconnected PHR which is linked to such as by some web protocol and populated by data from multiple sources such as the individual s health care provider s own EHR system pharmacy data or home diagnostic equipment 3 the tethered or provider system PHR which is essentially an extension often in the form of a web based portal application of the individual s health care provider s EHR that allows the individual some level of access to their own records within the provider s system Depending on the provider a tethered PHR may present data in a read only format not allowing the user to modify any data or it may provide some capabili
17. IQP MMX 0801 InfantCare A Personal Health Record oystem Prototype for the Next Generation An Interactive Qualifying Project Report submitted to the faculty of the WORCESTER POLYTECHNIC INSTITUTE in partial fulfillment of the requirements for the Degree of Bachelor of Science by Erik Archambault Konstantin Naryshkin Date April 28 2009 Advisors Professor Murali Mani Professor Bengisu Tulu Abstract We observed that commonly available personal health record PHR applications usually focus on handling general health information instead of special conditions To address this issue we designed and developed a PHR application with features targeted toward one specific user base caretakers of infants We utilized Google Health APIs and Java for the development of this application We also carried out preliminary usability testing with actual users Executive Summary In recent years electronic personal health records PHRs have started to become a wide spread and relevant technology To aid in acceptance of PHRs we worked to develop an application targeted for a specific user group that would help those users store their health records online We restricted the groups that we considered to those which had a large amount of health data We chose caretakers of infants as our target group since they have to manage a large amount of health data about their babies The generation that is currently coming into this world will be
18. Second Round of Survey Participation Erik Archambault and Konstantin Naryshkin Appendix E Informed Consent Form For Evaluation Participants Erik Archambault Appendix F Application Evaluation Survey Konstantin Naryshkin Appendix G InfantCare PHR Users Manual Konstantin Naryshkin vi Table of Contents VAN BIAD a 10 BERE M i PUR CCULIVG Summary ei Dn a ue e a E pu tad a RE EEA EA t is ii ACknowIe de RICIIS uos epa tees n a a a a T v AO a O N R vi Table of Contents iois ie ini ass o e ei ese hee earras e iae vii ErgeSonhc CE annn a RR E R AE E E A A TA viii Evo gil PM ix l Introduction EE 1 2 BACK MET AE E REE EA A AE TTN 4 LL Health MTOR AC S eeneioe eae ni iste e eR p pars oci sh 4 2 2 Electronic Health Record EHR sees eene eene nennen nennen 5 2 3 Personal Health Record PHR ccccccccccccscsssessecececececeesensnaeceseceeseeessnseseeeseesesenenteaeees 8 2 4 Analysis of PHR Applications scenic ridet ete ARE n ISCHIA eS SERERE EUCH ANS Sa aee exo edes apa 12 SEE uiae eS 16 oL Eenguirermients Analysts eaae actu deat dide eee a e dre i mia a pud Foie aS 17 3 2 Design of the InfantCare PHR Application sseesseeeeeeeeeeenee enne 18 23 System Development uae Use ee NETUS sacs a E UAR ANQURR ELK Uta CER OR dUN 20 t ME curo o
19. The surveys were mostly positive Most users praised the application Only one major defect was 30 reported One user had encountered difficulty saving data using the application The defect had not previously been reported and is not yet reproducible The first part of the survey was a System Usability Scale Using an unweighted scoring formula from Serco Ltd 65 we were able to assign each response a grade from 0 to 100 which reflects the respondent s satisfaction with the usability of our application When averaged together the three surveys give us a combined score of 69 17 For most of the questions the respondents gave favorable scores and no question had a score that was critical of the application The only question that received a neutral score was one asking if the application was cumbersome to use The second part of the survey consisted of open ended questions to allow the subject to express her opinion Out of the three respondents two praised the application for ease of use One user reported difficulty saving data that very drastically hindered her ability to use the application Several suggestions were made to improve the existing functionality of the application One was to allow the application to store partial records Another one was to increase the granularity in sleeping time records A third was to add in a visible confirmation when data is sent to the Google Server Respondents also made some suggestions about new
20. aditz Mar 2008 Better ID verification could boost PHR growth Telemedecine and e Health 14 2 115 Retrieved April 13 2009 from http find galegroup com itx infomark do action interpret amp contentSet IAC Documents amp type retrieve amp tabID T002 amp prodIdZHRCA amp docId A 179695606 amp source g ale amp srcprod HRCA amp version 1 0 amp userGroupName mlin_c_worpoly amp finalAuth true 41 P C Tang J S Ash D W Bates M Overhage and D Z Sands Mar 2006 Personal Health Records Definitions Benefits and Strategies for Overcoming Barriers to Adoption Journal of the American Medical Informatics Association 13 2 121 126 Retrieved April 13 2009 from http www jamia org cgi reprint 13 2 121 pdf 42 R Vesely Sep 2008 The search is on Data privacy remains a top concern as Google seeks more users partners for its new personal health record platform Modern healthcare 24 Retrieved April 13 2009 from http www modernhealthcare com article 20080929 REG 809269992 39 43 A Naditz Mar 2008 Marriott goes national with error tracking PHR Telemedecine and e Health 14 2 112 Retrieved April 13 2009 from http find galegroup com itx infomark do amp contentSet IAC Documents amp type retrieve amp tabID T002 amp prodIdZHRCA amp docId A 179695589 amp source g ale amp srcprod HRCA amp userGroupName mlin_c_worpoly amp version 1 0 44 J Dawson B Schooley and B Tulu 2009 A Real World Perspecti
21. al testing at Dossia companies for well over a year and used by Children s Hospital since 1998 it has yet to get a major public release 47 As it stands right now the only way to use Indivo is to download the source code and set up the complex data storage center required to keep records secure Microsoft Health Vault was also a promising candidate that we passed over Unlike Indivo which is not yet widely available Health Vault has been available for public use since October 2007 It supports the largest set of applications from which it can pull health records with 40 available at launch and more added since then 48 Records that are not available from one of the partners can be added manually by uploading them if they are available in a digital format or if it is one of a selected list of types including allergies immunizations and medications you can enter it by completing a form Health Vault also includes a specialized http www healthvault com http indivohealth org 13 search engine for medical questions The search engine includes targeted advertisements based on the search criteria though according to Microsoft no personal information from the health records is used for advertisement purposes 49 The largest reason for why Health Vault is a bad candidate is that it lacks a documented interface for third party applications to add records to it This presents a very large hurdle that would limit our efficiency if
22. ame Date 1 Y p Y Y Make a new entry Edit selected entry Delete selected entry 1 Enter the name of the immunization into the field labeled Name Enter the date of the immunization into the field labeled date in the order going left to right month date and year 3 Press the Make a new entry button 80 Editing an Existing Immunization mMansceen o Daily Activities Daily Notes Growth Table Immunizations Date Administered 456 3 4 2005 asdf 3 16 2016 ab 1 4 2017 Name Date Make a new entry Edit selected entry Delete selected entry 1 Select the entry that you want to edit in the table 2 Enter the corrected immunization name into the field labeled Name 3 Press the Edit selected entry button 81 Deleting an Existing Immunization Main Screen 1 4 2017 82 Main Screen 3 4 2005 asdf end 1 Select the growth table entry that you no longer want 2 Press the Delete selected entry button 83
23. antin Naryshkin konary wpi edu Murali Mani PhD Assistant Professor Department of Computer Science Worcester Polytechnic Institute 1 508 831 6421 mmani Q wpi edu Bengisu Tulu PhD Assistant Professor Department of Management Worcester Polytechnic Institute 1 508 831 5184 bengisu wpi edu 54 Appendix E Informed Consent Form For Evaluation Participants Informed Consent Agreement for Participation in a Research Study Investigators Erik Archambault Konstantin Naryshkin Contact Information Erik Archambault archer10 wpi edu Konstantin Naryshkin konary wpi edu Title of Research Study Infant care PHR Prototype Evaluation Introduction You are being asked to participate in a research study Before you agree however you must be fully informed about the purpose of the study the procedures to be followed and any benefits risks or discomfort that you may experience as a result of your participation This form presents information about the study so that you may make a fully informed decision regarding your participation Purpose of the study The purpose of this study is to gather evaluation information and feedback on an infant care PHR application prototype from caretakers of infants to be used in determining how well the prototype implements desirable features and characteristics of a software application for managing health records for infants Procedures to be followed We will provide you with a
24. are PHR Application Our third major decision was the format used to store the data on Google Health Because Google Health does not have an area to store many of the records that we create we depend on the Google Health notification board to store our data This lack of structure in our data storage backend causes us to create the Datum abstract class as an interface between the GUI and Connector The Datum is in some ways a design compromise in terms of complexity The Datum has to be very simple to store data to and load data from Google Health At the same time it wants to be complex to be easy to use for different fields such as tables of sleeping times and immunization records As a compromise between the two there is an abstract Datum class that is stored in the database The developer can then derive any number of children that will handle their own packing into a string and unpacking In our application we had the abstract 28 parent Datum and four children they are Note Immunization Measurement and FeedAndSleep see Figure 3 The Datum itself has three fields the date that the data relates to a unique id string and a type that corresponds to the child class that it belongs to The Note child is used in the Daily Notes tab and stores all the data for it The Immunization child class stores a list of immunizations for the immunizations tab The Growth Chart tab uses the Measurement child class FeedAndSleep child class stores the
25. ation 4 2 System Design We made several major decisions in this phase One was to decide how the data was going to be stored Another was what level of abstraction about the storage details would be used when developing the GUI The third decision was the way to figure out the detail of the data storage In order to make our system more secure the application is created so that no data is permanently stored on the user s computer Because of this our application is simply a GUI which converts data between a user readable format and a format used by Google Health which stored the actual data A user story illustrating this is shown in Figure 1 It depicts the user 25 editing a Health Record When the user starts up the software she enters her account information The application establishes a connection with the Google Health server The login credentials are then passed onto Google Health Once the server verifies them the software starts up the main menu to interface with the user The user can then look up the records that they want to edit The application requests the data that should go into the view from Google Health Google Health returns the data and the application then presents the data in the interface for a user to view To edit data the user tells the application the revised data The application accomplishes the edit in two actions first the original record is deleted from the server and then a corrected record is added
26. ber 7 2008 from http www sunshine healthcare org content files phr empowering cons pdf P F Brennan 2009 Health in Everyday Living Project HealthDesign E Primer Robert Wood Johnson Foundation Retrieved April 13 2009 from http www projecthealthdesign org media file E primer_3 pdf P F Brennan 2009 A New Vision for Personal Health Records Project HealthDesign E Primer Robert Wood Johnson Foundation Retrieved April 13 2009 from http www projecthealthdesign org media file ProjectHealthDesignePrimer pdf K Schorsch Jun 2008 Google Health and the PHR Do Consumers Care The Health Care Blog Retrieved April 1 2009 from http www thehealthcareblog com the_health_care_blog 2008 06 google health a html C Angst R Agarwal and J Downing May 2006 An Empirical Examination of the Importance of Defining the PHR for Research and for Practice University of Maryland Retrieved April 1 2009 from http www dhhs gov healthit ahic materials meeting07 cemp agaphrart0506 pdf K Mandl and I Kohane Mar 2009 No Small Change for the Health Information Economy The New England Journal of Medecine 360 13 1278 1281 Retrieved April 1 2009 from http content nejm org cgi content full 360 13 1278 J McCallum Jun 2008 PHR Standards Big Step Forward Health Content Advisors Retrieved April 1 2009 from http www healthcontentadvisors com 2008 06 26 phr standards big step forward R Krohn Winter 2007 The
27. ce P TE 22 ES C RC d 23 4 1 R uuiremernts AXBabysi82 esce ea a a E nda A tu a qu a oe Mesos 23 4 1 Research Pactcipablts us eee niine e Ei 23 4 1 2 Requirements Gathering 2 5 o de ES S ern PERI MA U desan ERU i ES QU eed vta Eran 24 4 1 3 Determining Requirements 9 ex Up omiies aste ap aee haee ie at presens dud 24 42 System DESS dotata adatta d edad dotes eee dee E docs LUN e cepas tes 25 4 3 System Development uiis ey eX VAS AR lea ERA INN YS QR ERES CRM EE TERRE H RA TN e eges 29 AA EV Ciccro TR 30 5 Conclusions and Recommendations oer cee ects eie amp tee eel cee 33 RIGIeI Oe Sagen inas eea a tesi A dde iG obere terc uisi i e aS 36 Appendix A Invitation to potential Survey Participants esee 43 Appendix B Informed Consent Form For Survey Participants 45 Appendix C Requirements Gathering Survey s dasa sce epa ves ens eed pa sae hde qeu od aa ec pde depo de tases 48 Appendix D Invitation to Second Round of Survey Participation esee 53 Appendix E Informed Consent Form For Evaluation Participants eee 55 Appendix F Application Evaluation Survey sesessseesseessessseesssressseesseessersseresseesssresseesseesseeesseee 58 Appendix G InfantCare PHR Users Manual 1 cei re erp ati dec abeo ed Speed vo puces 62 vii List of Figures Figure 1 Sequence of Communication Within the Application eee Figure 2 Information Flow of our
28. d may want to take advantage of other features that such a system may offer In the next chapter we present the background information relevant to this project This includes discussion of health informatics definition and principles of electronic health records and personal health records and review of some available PHR applications Chapter 3 describes our methodology including overall planning and decision making processes for this project Chapter 4 is a presentation and discussion of our results that is the outcome we achieved in carrying out our methodology Finally chapter 5 contains our conclusions based on our results in this project as well as recommendations for future work 2 Background The focus of this project is the impact of personal health records PHRs or more specifically electronic software based or web based PHR systems In order to understand these systems and study their impact it is first necessary to understand some of the basic concepts of health informatics electronic health records EHRs PHRs in general and electronic PHRs One can then begin to examine the actual potential for impact of electronic PHRs After the presentation of the basic concepts this examination will begin by looking at a study on how willing patients are to use electronic personal health records It will continue with a review of some currently available examples of electronic PHR systems for analysis and comparison 2 1 Health I
29. data of the Daily Activity tab date EH FeedAndSleep CO CD A IN EN Cem c C C gt Figure 3 Data Model of the Datum 4 3 System Development Our development was done using the Eclipse IDE and Java 1 6 JDK This limits our audience to people who have Java 6 installed but since it was released a few years ago we 29 assume that the users will have it We used the Standard Widget Toolkit to develop the GUI We used Google Data API version 2 0 to get communicate with Google Health Our application was tested on Windows XP and Windows Vista both running Java 6 When testing with earlier versions of Java we found that the class loader is not compatible with our code and stops our application from starting At the end of the development phase we created a prototype that implements a sufficient subset of features that we felt our application should provide to the end user Our final prototype is an application that can e authenticate users using Google Health e connect to Google Health and store data on the server e store and chart the height weight and head circumference as the child develops e store and chart daily sleeping and chart daily eating patterns e keep track of how many times a child produced bodily waste each day e store immunizations the child had and e keep miscellaneous notes about the child 4 4 Evaluation By our deadline we received a completed survey from all but one of our subjects
30. detail in following sections 2 2 Electronic Health Record EHR The term electronic health record EHR is a generic term that can refer to a number of distinct but similar types of electronic patient care systems 15 In general EHRs are electronic record systems used by medical professionals to maintain and process patient records as well as to facilitate access to these records by those that need them 16 One formal definition given is a secure real time point of care patient centric information resource for clinicians 17 The important point is that EHRs are designed for use by clinicians rather than patients themselves which is a major difference between EHRs and PHRs 18 As for the intended function and purpose of an EHR there have been multiple attempts by different healthcare standards organizations to produce a set of requirements that EHRs should meet For example a committee from the Institute of Medicine of the National Academies produced this set of criteria that an EHR s core functionalities should satisfy Improve patient safety Support the delivery of effective patient care Facilitate management of chronic conditions Improve efficiency Feasibility of implementation 19 Another key aspect of EHRs is interoperability According to the National Alliance for Health Information Technology an electronic medical record EMR is a patient heath record maintained and used by a single healthcare organization wh
31. e age of the child as data Instead we calculate it as 21 a function of the date of birth and the entry date In order to accomplish this the user profile had to be pulled from the Google Health server This would not be by any means be an easy task because the profile is kept in the footer of the Continuity of Care Records of the user and the date of birth is buried in the profile Normally the profile can be pulled from the same feed URL as the notice board and read using an XML parser Unfortunately many of the URLs that one can use to edit it do not work 64 When we did get one that did work it could not be parsed by the XML parser It is currently being parsed using the String indexOf method After the third iteration we decided that our application was feature complete enough to be useful to the general public and sent it off to be evaluated 3 4 Evaluation To evaluate our application we developed a survey and invited see Appendix D the same subjects that participated in the requirements gathering survey This survey see Appendix F consists of a standard System Usability Scale set of questions 65 These allow us to gauge the overall ease of use of the application We also included several questions to give the user a space to add additional comments that they may have Included with the survey and application was an informed consent waiver similar to the one that was used with the initial requirement gathering survey see A
32. eight of the child in the field labeled Weight Enter the head circumference of the child in the field labeled Head Circumference Press the Make a new entry button 2 3 4 5 Editing an Existing Table Entry MManscreen ox Daily Activities Daily Notes Growth Table Immunizations 1 4 2008 247 0 12 0 45 0 78 0 FC Ce EC Date Height in Weight Ibs Head Circumference tin Make a new entry Edit selected E Delete selected entry 1 Select the entry in the table that you want to edit 2 Enter the corrected height weight and head circumference 77 3 Press the Edit selected entry button to save it Deleting an Existing Table Entry Daily Activities Daily Notes Growth Table Immunizations 12 0 45 0 78 0 Mo CNN Height in Weight Ibs Head Circumference in Make a new entry Edit selected entry Delete selected entry 1 Select the growth table entry that you no longer want 2 Press the Delete selected entry button 78 Immunizations The immunizations table is a quick list of all the immunizations that the child received and the date administered For technical reasons immunization names cannot contain the symbols and l Also multiple spaces between any two words are converted to a single space when saved 79 Posting a New Immunization O Main Screen Date Administered 456 3 4 2005 afd 3 16 2016 asdf 3 16 2016 ab 1 4 2017 M
33. er 2 that usability strongly influences the potential impact of such applications a more fully developed application like ours could certainly have a considerable potential impact in this respect Criticisms and recommended modifications to our application by and large were concerned with its limited functionality As discussed in Chapter 3 we planned on implementing as many potentially useful features as time permitted Ultimately we were only able to implement core storage and retrieval functionality for the most important types of records as well as some rudimentary charting capabilities for certain record types The conclusion to be made here and the overall impression seeming to come from the application evaluations is that the idea behind the application is a good one and that further developing it and fleshing out its 33 functionality could make it very useful Referring again to the discussion in Chapter 2 about what attributes affect the impact of PHR applications while usability is highly important an application must also have features that make it worth using Thus fully developed functionality must be implemented to maximize an application s potential impact As for recommendations there is much future work that could be done just in terms of building from our example i e taking our application or one similar to it and exploring the possibilities of taking it further expanding and adding onto it This is largely in the ve
34. et of Daily Notes Main Screen 4 s sf a es 1 Select the date of the record in the Display notes stored for this date drop down 2 Press the Display button to load the data into the screen 72 Editing an Existing Set of Daily Notes L Main Screen mjel x Daily Activities Daily Notes Growth Table Immunizations Diaper Notes DIAPER NOTE HERE Feeding Notes FEEDING NOTE HERE Sleeping Notes 3 SLEEPING NOTE Miscellaneous Notes 4 MISC NOTE Save new notes xl E under this date zj Save Display notes stored for this date 2 2 2008 Display j 1 Edit currently displayed notes Delete currently displayed notes Show all notes of this type Show Select the date of the record in the Display notes stored for this date drop down Press the Display button to load the data into the screen Edit the data in the notes as you did when entering it Press Edit currently displayed notes to save the data TD pne 73 Deleting an Existing Set of Daily Notes L Main Screen nmi x Daily Activities Daily Notes Growth Table Immunizations Diaper Notes DIAPER NOTE HERE Feeding Notes FEEDING NOTE HERE Sleeping Notes SLEEPING NOTE Miscellaneous Notes 4 MISC NOTE Save new notes xl E under this date zl Save Display notes stored for this date 2 2 2008 ri Display 2 Edit currently
35. formation about daily activities such as sleep patterns feeding patterns wet and soiled diapers vaccinations etc This application works with a web based personal health record system Google Health that is already freely available In November you participated in the 1 phase of this study and provided requirements for our system We have recently completed development on our application InfantCare PHR and we would like to get feedback on it In order to evaluate our application better invite you to the second phase of the study where we will ask you to try the system and provide feedback Since you participated in the first phase that we did to gather requirements for our application we feel that your input would be especially helpful Attached is a short list of questions for you to answer about the application please consider them in that context The questions are intended to give us an objective overview of your experience We have also attached the application the installation instructions and the user manual We would appreciate it if you could fill this survey out in the next ten days and return it to us by April 15 We look forward to your participation Thank you for your time Sincerely For more information about Worcester Polytechnic Institute please visit http www wpi edu z The Transformative Potential of Integrated Personal Health Records 53 Erik Archambault archer10 Q wpi edu Advisors Konst
36. group googlehealthdevelopers msg a487cd43fe872678 4 65 Serco Ltd 2001 Satisfaction questionnaires Cost effective User Centred Design Retrieved March 20 2008 from http www usabilitynet org trump methods satisfaction htm 42 Appendix A Invitation to potential Survey Participants Invitation to Participate in a Research Project We are Erik Archambault and Konstantin Naryshkin computer science students currently working on our Interactive Qualifying Project IQP at WPI The IQP is a project all students must complete and its purpose is to relate science and technology to societal and human needs The topic of our IQP is the Impact of Personal Health Records PHR PHR systems in general enable individuals to electronically manage an integrated and comprehensive view of their health information including individual and family medications medical conditions immunizations allergies and other personal health information In researching the area we have discovered that there seem to be no widely available electronic personal health record applications that facilitate health information management for infants We found this quite surprising given how useful such an application could be for so many people Therefore in our IQP we decided to develop an application that will help parents of infants manage information about daily activities such as sleep patterns feeding patterns wet and soiled diapers vaccinations etc Thi
37. hitecture of the system would consist of two parts One handled the GUI and user interaction The other dealt with Google Health API and storing events to it The separated design insulated the GUI from the details of the data storage and allowed the two parts to be developed separately around a common interface The separation allows the GUI and database not to depend on one another to implement functionality since the single interface is reasonably simple to implement on both sides We also wanted to have an abstraction between the GUI and Google Health API The GUI deals in data structures such as a set of measurements for a growth table In contrast Google Health does not have these data structures Our architecture had to include a layer of abstraction to pass data between the components 19 3 3 System Development In developing the application we accomplished it in three iterations The first was to create the core functionality of the application The second two iterations were bug fixes and improving on the functionality The first release was completed on December 17th It had a four tab design The first tab is a record tab It contains a table of the age height weight and head circumference of a child as a function of time The second is a daily chart to track the number of wet and soiled diapers as well as the child s feeding and sleeping times The third tab is for daily notes The parent can keep four types of notes diaper n
38. identiality of mail until they reach us Upon receipt of completed surveys the documents were to be kept 23 secured In accordance with regulations upon completion of this project these documents are to remain secured or if necessary be destroyed 4 1 2 Requirements Gathering We created a self administered questionnaire including both discrete quantitative questions and open response qualitative questions to be given to our participants Ultimately four subjects agreed to participate in our survey The subjects were three females and one male averaging 30 years old each a parent of a single young child This group included one member of the REACH program Our survey was made available to the participants in print form and via e mail with appropriate instructions Our full survey is presented in Appendix C 4 1 3 Determining Requirements Results from our survey provided us with some of the most common types of information recorded about infants as well as input about desirable qualities for our application and data representation methods The survey results agreed with our literature research results in that the potential users stressed the importance of ease of use as well as privacy and information security Other desirable qualities mentioned were that use of the application not be time consuming which could be considered a part of ease of use and portability or the ability to access records from anywhere As far as the most
39. ile an EHR is the aggregate health record for a patient accumulating data from multiple organizations essentially an EHR is a larger scale EMR with interoperability 20 Some would even go so far as to say that widespread adoption of stand alone EMR systems with no interoperability would set a detrimental precedent for the treatment of health information 21 Much of the literature and discussion of health informatics especially its benefits and costs concerns the adoption of EHR systems According to a presentation by Catz 22 adoption of EHRs is supposed to bring about improved quality of healthcare delivery and enhanced healthcare management In this presentation they are cited as key to modernizing healthcare and it is stated that their implementation should be a priority However it is also stated that one of the most tangible potential benefits of an EHR system is reduction of medical error rates For example it is stated that medication errors account for many of the deaths attributed to medical mistakes while studies have shown that many even most medication errors can be eliminated through the use of information technology However as seems to often be the issue with healthcare actually implementing the system s is costly 23 Though it does seem potentially that bearing this cost could serve as an investment which will allow great saving in the long term 24 Some estimates for nationwide EHR implementation in the U S ra
40. in of additional or refined functionality such as that we had considered implementing or that which our evaluation participants brought to our attention There are indeed many more features that could be implemented in an application like ours to be evaluated These include better capabilities for representing data visually using charts graphs and calendar style interfaces for example This would be especially useful in conjunction with the ability to analyze the data aggregated over time This could be further enhanced with the ability to compare trends in the data to a data set representing what is considered to be average or normal On a similar note there could be implemented some sort of sanity checks which notify the user of abnormalities in the data Another way of making our application or a similar application that interacts with Google Health more useful is to provide deeper integration with Google Health s inherent functionality Our application was designed mainly as a standalone application that made use of Google Health primarily for secure storage of data At least one of our evaluation participants seemed to be anticipating or at least recommending some fuller integration with Google Health in the respect 34 that the records they stored would be visible in some meaningful way and perhaps also modifiable through Google Health s own web interface This level of communication and interaction with Google Health would greatly i
41. isplay button to load the data into the screen 3 Edit the data on feeding times sleeping times and diapers as you did when you first entered the data 4 Press Edit currently displayed chart to save the data 66 Deleting an Existing Daily Activity Main Screen CE U U U U lt U T E G HI CE U U G NM U U E G HI m m m m m m a p o o a a E 5i Iv LI E M m LI Bj m LI LI Er 1 Select the date of the record in the Display chart for this date drop down 2 Press the Display button to bring up the data and confirm that this is the data that you wish to delete 3 Press the Delete currently displayed chart button to delete the data 67 Examining all Daily Activity Data by Type lll Main Screen t B ini xi Daly Notes Growth Table Immunizations EXIT ey i L LI v LI LI v LI LI Bj LI LI LI CE U U U U lt U T E G HI im m im im m U m m HI im m mmm mimimmimium Er 1 Select the data type in the Show all data of this type dropdown 2 Press Show to have the data pop up in a new window 68 Charting Daily Activity Data LL Main Screen eee eee eee eee m mim eeeceeeee im mm ee eee im m m m m C im m m m m m PSE fy seve serez play Press the Chart
42. l 15 C P Waegemann May 2003 EHR vs CPR vs EMR Healthcare Informatics Retrieved April 13 2009 from http www providersedge com ehdocs ehr article EHR vs CPR vs EMR pdf 16 E Fishman Apr 2007 Terminology in the HealthCare Records Industry EHR Scope 1 83 86 Retrieved April 13 2009 from http www emrconsultant com emr terminology php 17 T Handler R Holtmeier J Metzger M Overhage S Taylor and C Underwood Jul 2003 HIMSS Electronic Health Record Definitional Model Version 1 1 Healthcare Information and Management Systems Society Retrieved April 13 209 from http www himss org content files ehrattributes070703 pdf 18 E A Blechman Sep 2007 PHRs Types Capabilities Consumer Needs amp Value Propositions Presentation AHIC Consumer Empowerment Workgroup Retrieved October 6 2008 from http www thesmartphr com Medical Home PHR Options pdf 19 P C Tang Jul 2003 Key Capabilities of an Electronic Health Record System Letter Report Committee on Data Standards for Patient Safety Institute of Medicine of the National Academies Retrieved April 13 2009 from http www providersedge com ehdocs ehr articles Key Capabilities of an EHR System pdf 20 H Neal Nov 2008 EHR vs EMR What s the Difference Software Advice Retrieved March 29 2009 from http www softwareadvice com articles medical ehr vs emr whats the difference 21
43. l Review Board WPI IRB will be able to inspect and have access to confidential data that identify you by name Any publication or presentation of the data will not identify you Compensation or treatment in the event of injury This study involves no apparent risk of injury or harm to you Thus there is no need for compensation or medical treatment in the event of injury It is required to inform you that you do not give up any of your legal rights by signing this statement For more information about this research or about the rights of research participants or in case of research related injury contact Erik Archambault Konstantin Naryshkin archer10 Q wpi edu konary wpi edu Advisors Murali Mani PhD Bengisu Tulu PhD Assistant Professor Assistant Professor Department of Computer Science Department of Management Worcester Polytechnic Institute Worcester Polytechnic Institute 1 508 831 6421 1 508 831 5184 mmani wpi edu bengisu wpi edu 46 You may also contact the chair of the WPI Institutional Review Board Prof Kent Rissmiller Tel 508 831 5019 Email kjr wpi edu or WPI s University Compliance Officer Michael J Curley Tel 508 831 6919 Email mjcurley wpi edu Your participation in this research is voluntary Your refusal to participate will not result in any penalty to you or any loss of benefits to which you may otherwise be entitled You may decide to stop participating in the research at any time witho
44. lectronic system on a computer a Are there any features that you feel are essential b Are there any features that you would prefer to have but not essential c Would you keep any information other than the ones you have listed in question 1 via this method 51 9 Are there any other suggestions that you want to offer 52 Appendix D Invitation to Second Round of Survey Participation Invitation to Participate in the Second Phase of a Research Project We are Erik Archambault and Konstantin Naryshkin computer science students currently finishing our Interactive Qualifying Project IQP at WPI The IQP is a project all students must complete and its purpose is to relate science and technology to societal and human needs The topic of our IQP is the Impact of Personal Health Records PHR PHR systems in general enable individuals to electronically manage an integrated and comprehensive view of their health information including individual and family medications medical conditions immunizations allergies and other personal health information In researching the area we have discovered that there seem to be no widely available electronic personal health record applications that facilitate health information management for infants We found this quite surprising given how useful such an application could be for so many people Therefore in our IQP we decided to develop an application that will help parents of infants manage in
45. lication They praised the application s ease of use and complimented the application for having all the basic functionality that the user wanted On a System Usability Scale we scored 69 167 out of 100 with no question on the survey upon which we did particularly bad User suggestions focused mostly on getting more aggregate data such a total sleeping times over the course of a day and a summary of daily activities over the course of a week or month iv Acknowledgements We would like to thank our advisors Professor Murali Mani and Professor Bengisu Tulu for the opportunity to do this project and helping us get through the report We would also like to thank the members of the Google Health developers news group for help with the Google Health API Finally we would like to thank the participants of your studies for their time and valuable input Authorship Executive Summary Konstantin Naryshkin Chapter 1 Introduction Erik Archambault Chapter 2 Background Erik Archambault and Konstantin Naryshkin Chapter 3 Methodology Erik Archambault and Konstantin Naryshkin Chapter 4 Results Erik Archambault and Konstantin Naryshkin Chapter 5 Results and Conclusions Erik Archambault Appendix A Invitation to potential Survey Participants Erik Archambault Appendix B Informed Consent Form For Survey Participants Erik Archambault Appendix C Requirements Gathering Survey Konstantin Naryshkin Appendix D Invitation to
46. ly divided and sequential and each phase should thoroughly accomplish all that is necessary before beginning the next phase 54 This may not have allowed us the flexibility we would need in our development process as well as still requiring more time than was available to us Also the waterfall SDLC is supposed to rely on users exclusively for the purposes of requirements gathering whereas we wanted to conduct some form of user evaluation of our final product 55 Ultimately we decided to use a rapid application development process Specifically we chose a prototyping based methodology This process would give us the needed flexibility by making multiple traditionally sequential development phases concurrent 54 It would be well suited to allow us to implement a reasonable proportion of our functionality goals in our limited time frame 56 Additionally this SDLC includes the desired user assessment evaluation of the prototype 53 Thus while in our development process the implementation depended on the application design and the design depended on the requirements analysis the phases did largely overlap 3 1 Requirements Analysis To develop our prototype we first would have to gather information to determine the desired requirements to fulfill We planned to invite members of the intended user base parents or caretakers of infants to participate in a research study for this purpose Specifically we planned to approach members of
47. me to use Strongly Disagree Strongly Agree 1 2 3 4 5 9 Ifelt very confident using the system Strongly Disagree Strongly Agree 1 2 3 4 5 10 I needed to learn a lot of things before I could get going with this system Strongly Disagree Strongly Agree 1 2 3 4 5 39 Part 2 General questions Please answer the following based on your experience using the InfantCare PHR system 1 What is your overall impression of InfantCare PHR 2 Was there a part of the application that you found especially hard to use Especially easy 3 Are there any suggestions that you would make for us to improve our application 60 4 Did you encounter any errors while using the application 5 What other features would you like to see in the application 61 Appendix G InfantCare PHR Users Manual Introduction Though we hope that the InfantCare PHR will be straightforward and easy to use we have created this manual to give you a reference containing all the functionality and a step by step guide to using it Prerequisites In order to use the program you need Java 6 or newer Java can be downloaded at http www java com en Select the button labeled Free Java Download and follow the instructions on the page You will need to have a Google Health account for your infant used to store records and for profile information such as the birth date You can learn more about Google Health and create an account at https w
48. n Now we have discovered some of the most important potential criteria to determine the usefulness and possible impact of an electronic PHR In moving forward we will now analyze and compare some currently available web based PHR systems 2 4 Analysis of PHR Applications For our project we need to select a PHR application for which we will write our tool At the current time there are three major online applications that offer online PHR These are Google Health Microsoft HealthVault and Indivo Indivo is backed by a consortium of https www google com health 12 industry leaders including Wal Mart Stores Inc Intel Corp AT amp T Inc and five other large companies collectively referred to as Dossia 45 Out of the three Indivo is clearly the weakest candidate for our purposes In theory Indivo should be the front runner in our search It is being developed as a collaboration between Dossia and Children s Hospital Boston which offers it a unique ability to include both medical professionals and a large pool of volunteers in the development process It is also the only product of the three that is open source allowing us to develop a tool that would better interface with the system The developers go as far as to encourage third parties to create their own clients to fit specialized needs 46 Unfortunately Indivo loses out because it is yet to become available to the general populace Though it has been in intern
49. ncrease the complexity of such an application as well as not being possible with regard to some of the records our application deals with given the current state of Google Health In addition those of us involved with this project made note of the ubiquity of portable devices such as smart phones and PDAs and the way in which people use them for scheduling purposes and handling information on a daily basis As a result it seems that one possible avenue for greatly increasing the impact of a PHR application like ours would be to implement it in a portable form so that it could be used in conjunction with these portable devices that people tend to carry with them at all times Ultimately our results look promising It appears that PHR applications certainly do have at least the potential to have some significant impact on their user populations especially those which cater specifically to the needs of particular populations While our work attempts to confirm this and explore the area of PHR applications with targeted functionality there remains a wide field of future work to build upon it reinforce it and examine targeted applications much more deeply than we could hope to in a project of this scale and scope 35 References 1 2 3 4 5 10 M Ball C Smith and R Bakalar Winter 2007 Personal Health Records Empowering Consumers Journal of Healthcare Information Management 21 1 76 86 Retrieved Octo
50. net based records generally cited privacy concerns If for the sake of argument we take these results to be representative of widespread attitudes toward electronic PHRs we can make some conclusions as to the possible impact of electronic PHRs While many people choose not to avail themselves of the capabilities of electronic PHRs there are obviously those who do Even among those who do not make use of such applications there seems to be the understanding that these applications could be useful in certain situations and to certain people This is revealed by the fact that most of the respondents in this survey including nonusers felt that people should maintain their own personal health records and that most of the nonusers planned to use the application if when the situation called for it In addition an important factor in determining whether or not an individual is likely to use such an application appears to be how easy it is to use for that individual Another important inference is that people were reluctant to store their records in some form on the Internet mainly because of privacy concerns It is important to note at this point that the survey was conducted in 1999 2000 and current attitudes toward the safety of information on the Internet may be different However even though many more people trust their confidential information to Internet data stores today privacy and information security are still major concerns and problematic i
51. nformatics According to answers from Zeger 13 to questions about the nature of health informatics health informatics in general is the science that deals with health information its structure acquisition and use Zeger goes on to describe how the field can be divided into three major branches which differ conceptually in their scale bioinformatics medical informatics and public health informatics Bioinformatics deals with using information technology and computing to gain understanding of biomolecular and cellular processes Medical informatics the branch with which this project is primarily concerned deals largely with usage and handling of patient information Public health informatics is a more statistical branch dealing with monitoring and measuring the health of populations rather than individuals Medical informatics according to Bansal 14 can be considered to encompass a wide array of subfields including such uses of information technology as telemedicine computer 4 assisted surgery technology medical simulations and virtual environments and physician and patient education Also discussed by Bansal in accordance with the previously mentioned focus of medical informatics on patient information a major area of medical informatics is that of computer based patient records Electronic patient records also known as electronic health records EHRs are partially the focus of this project and will be discussed in more
52. nformation leaks still occur 10 It can be inferred from this survey that certain characteristics of an electronic PHR increase its appeal to potential users and thus its potential impact The importance of these characteristics is also supported by numerous other sources It seems that the presence of a variety of features and capabilities that would make a PHR appealing to a diverse set of users is important 1 8 10 35 36 Also ease of use is important to make a PHR accessible and useful to a large audience 8 36 39 Perhaps the most important issue is the overall issue of information security and user privacy This issue appears to be addressed more often than any of the others it is of the greatest importance that a PHR application offer adequate security and that users can be confident in their privacy especially with web based applications 1 8 35 36 39 42 In addition to those important factors indicated by the study some other possible issues for PHR applications to address are accuracy and error handling The improvement of the accuracy of information entered by the use of guided data entry and the detection of likely errors by a clinical rules engine can improve acceptance of a PHR application by addressing these issues 35 43 Another survey 44 focused on user satisfaction of a tethered PHR It was conducted at a Fortune 500 company using a major third party PHR solution Out of the 368 invited participants 132
53. nge as high as 150 billion 25 However others say that this may lead to the country saving 500 billion per year 26 At any rate the recent American Recovery and Reinvestment Act of 2009 includes provisions promoting adoption of health information technology by healthcare providers with cost estimates that include anticipated future savings to offset near term expenses to some degree 27 Such grand machinations as the global adoption of EHRs are beyond the scope of this project The focus is instead on something on a smaller scale more available and tangible to actual healthcare patients this being PHRs which are addressed in detail in following sections Consideration must also be given to determining which group of people health informatics would be most likely to impact throughout their lives Given that health informatics have yet to be widely adopted especially in any ways visible to patients obviously the population most likely to be impacted the most by these technologies are today s children especially the recently born Even now information technology is being used to benefit children s health through the use of interactive multimedia applications for educating children 28 Unfortunately newborns and infants are unable to make use of information technology themselves However in an age where there are concerns over ensuring children now and in the future have adequate healthcare coverage and over the present and fut
54. of electronic PHRs and their impact there seems to be a persistent problem observed from various sources about PHRs 8 9 Based on sources like these most applications seem to be very general in terms of the type of information and records they accommodate These applications tend to record basic information such as physical attributes current medical conditions and prescription information for an individual but there is a lack of specific targeted applications or application features that would be desirable to some particular set of potential users such as those with particular medical conditions The scope of this problem is quite considerable as it appears to be common among widely available PHR applications As our background research indicates see Chapter 2 one of the most important characteristics that affect the impact of a PHR application is the set of features it offers 10 An application that offers features that increase its appeal in the eyes of certain potential users is more likely to be deemed useful and actually used by these people than an application lacking those features 1 Thus the potential impact of a PHR application could seemingly be increased with respect to this important criterion by giving it features that appeal to diverse sets of users or that appeal strongly to a specific preferably large set of users Due to this lack of targeted PHR applications we have decided to create a prototype of such a
55. oft with your medical records a Yes b No Do you know if your healthcare provider offers the ability to view your medical records online a Yes If so have you ever used this system 48 Part 3 2 b No c Idon t know Have you ever heard of Google Health or any other Personal Health Record system such as Microsoft Health Vault Indivo iHealthrecord or others a Yes If so which one s Did you try out the system 1 Yes I did 2 No I did not b No never before Would you be interested in testing an application for maintaining infant health records a Yes b Not at this time c No Can we contact you to clarify your response to this survey a Yes If so what phone number or e mail at which you can be reached and preferred times at which to reach you b No Specific Questions Please explain what type of health and growth information you kept stored and organized about your children How were these records kept 49 3 What format did you keep the records in table chart etc as appropriate 4 Did you face any difficulties or annoyances keeping records this way Please explain 5 Would you be comfortable keeping these records electronically using a computer 6 Would you find a computer program that had an experience similar to your old methods intuitive 50 7 Would you be able to suggest a more intuitive way to store them 8 If you were to store these records in an e
56. ogramming languages It also has a news group and forum hosted by Google with developers present to answer questions As shown in Table 1 Google Health was the strong choice for our back end They have an open and public API They have public availability They have a growing number of third party partners All three are major factors that pushed us to decide on Google Health as our PHR application of choice for this project Table 1 Comparison of PHR Applications Indivo Health Vault Google Health Backing Wal Mart Stores Inc Intel Microsoft Google company s Corp AT amp T Inc Children s Hospital Boston Public Availability Not yet widely available Public beta since Public beta since May 2008 October 2007 Third party data Children s Hospital Boston 23 applications to 9 applications to import medical and sources and corporate health plans import records and prescription records 17 applications applications analyze risks that use data for other purposes Openness to independent add ons Open source No obvious methods Open API and support for some standard protocols 15 3 Methodology In the previous chapter we researched health informatics and PHR technology and analyzed some currently available PHR applications Having considered the three candidate applications Google Health is the best choice to work with It is both easiest to code for and will provide users the best experience
57. ontact us or our advisors with our information below We look forward to your participation Sincerely Erik Archambault Konstantin Naryshkin archer10 Q wpi edu konary Q wpi edu 43 Advisors Murali Mani PhD Bengisu Tulu PhD Assistant Professor Assistant Professor Department of Computer Science Department of Management Worcester Polytechnic Institute Worcester Polytechnic Institute 1 508 831 6421 1 508 831 5184 mmani wpi edu bengisu wpi edu For more information about Worcester Polytechnic Institute please visit http www wpi edu The Transformative Potential of Integrated Personal Health Records 44 Appendix B Informed Consent Form For Survey Participants Informed Consent Agreement for Participation in a Research Study Investigators Erik Archambault Konstantin Naryshkin Contact Information Erik Archambault archer10 wpi edu Konstantin Naryshkin konary wpi edu Title of Research Study Requirements Analysis Survey for Infant care PHR Prototype Introduction You are being asked to participate in a research study Before you agree however you must be fully informed about the purpose of the study the procedures to be followed and any benefits risks or discomfort that you may experience as a result of your participation This form presents information about the study so that you may make a fully informed decision regarding your participation Purpose of the study The purpose of this s
58. otes feeding notes sleeping notes and miscellaneous notes The final tab is an immunization tab to record immunization dates Each of the tabs was able to pull data from and post new data into Google Health We also had support for the daily charts and daily notes tabs to pop up new windows to give the user a summary of all entries of a certain type wet diaper count sleeping notes etc Despite the fact that Google Health does have a public API it is not very well documented Although Javadoc is available methods often lack meaningful comments or have comments imported from a general Google Data interface 62 The problem is further increased by the fact that the Google tutorial on API usage is very minimal and targeted towards developers of web applications rather than applets 63 Finally Google Health does not have specific fields to store data such as infant feeding and sleeping times To get around all these problems we built a solution using the Google Health notice board The Google Health notice 20 board is a well documented and accessible feature It allows us to store our data as discrete objects on the Google Health server The second iteration of the application was done by March 16th It featured several bug fixes and added the ability to edit and delete data out of the data store On the GUI end it involved creating new data boxes and buttons to handle the enhanced functionality On the data storage side the ability
59. ou by name Any publication or presentation of the data will not identify you Compensation or treatment in the event of injury This study involves no apparent risk of injury or harm to you Thus there is no need for compensation or medical treatment in the event of injury It is required to inform you that you do not give up any of your legal rights by signing this statement For more information about this research or about the rights of research participants or in case of research related injury contact Erik Archambault Konstantin Naryshkin archer10 9 wpi edu konary wpi edu Advisors Murali Mani PhD Bengisu Tulu PhD Assistant Professor Assistant Professor Department of Computer Science Department of Management Worcester Polytechnic Institute Worcester Polytechnic Institute 1 508 831 6421 1 508 831 5184 mmani wpi edu bengisu wpi edu 56 You may also contact the chair of the WPI Institutional Review Board Prof Kent Rissmiller Tel 508 831 5019 Email kjr wpi edu or WPI s University Compliance Officer Michael J Curley Tel 508 831 6919 Email mjcurley wpi edu Your participation in this research is voluntary Your refusal to participate will not result in any penalty to you or any loss of benefits to which you may otherwise be entitled You may decide to stop participating in the research at any time without penalty or loss of other benefits The project investigators retain the right to cancel or postpone
60. ppendix E and a users manual see Appendix G Participants were given 10 days to evaluate the application and provide feedback 22 4 Results The previous chapter outlined our planned methodology for this project In this chapter we present the results of carrying out that plan 4 1 Requirements Analysis 4 1 1 Research Participants In order to create our application prototype we approached members of the intended user group and gathered their input as to what features would be desirable in such an application As discussed in the previous chapter members of the REACH Program for child development were the primary base of potential users we invited to participate as well as suitable personal contacts The invitation letter given to potential survey participants is presented in Appendix A We distributed our survey Appendix C to those who responded to our invitation and agreed to participate All research participants were required to give their formal consent to be surveyed in accordance with regulations of the WPI Institutional Review Board IRB The IRB approved informed consent form is presented in Appendix B Measures were taken to protect identifying information of our human subjects Those participating in our survey were instructed to return completed surveys to us in print form either in person or by mail to ensure that these documents would be directly transferred to us or protected by those laws which protect the conf
61. responded to the survey When asked about overall satisfaction 45 were satisfied with the software while 32 were not On the question of concerns the two biggest were outside intrusion 34 and the employer misusing the information 22 36 of responders chose not to voice any concerns On the questions of expectations of the system 55 11 had none 23 wanted privacy and security 14 wanted up to date and accurate information and 8 wanted a usable and user friendly interface When asked if they would use the PHR in the case of an emergency 45 chose not to answer 27 said they would with 11 saying that it would be especially useful in they are unable to communicate and 17 said that they would not want to use it many preferring to speak for themselves When asked if they wanted the PHR available to emergency responders 40 were not sure 29 voiced concern about giving the information to a third party 7 questioned whether the PHR was reliable enough for such a situation and 5 were not even sure if the emergency responders would be able to use the PHR system only 19 said that they wanted the information to be available The expectations of ease of use were easy to find information 31 private and secure application 5 and a standard UI 296 with 62 not voicing an opinion When the responders were asked to evaluate the UI 2196 found it hard to navigate while 2296 praised the format and layout and 3046 praised the navigatio
62. s application will work with a web based personal health record system Google Health that is already freely available We are currently working to create a set of requirements for our application and would like to invite you to take a survey and if you wish be interviewed as part of the research activities for our IQP because we value your input as the caretaker of an infant In order to create this application we want to get an understanding of how records are currently kept and what information is recorded Our questions will be on the topics of how you manage health information maintain records what records need to maintained and what difficulties or frustrations you had doing so The survey will be designed so as to not take up much of your time and it may be completed at your leisure and returned to us Interviews will not exceed half an hour and they will be conducted on the phone or in person We will try to model our system as closely as possible to the traditional methods so that our system is intuitive We also hope to build upon the traditional methods to improve them The resulting application will be available to you for testing purposes once this project is completed The survey will be available online via email or on paper by October 28 2008 for two weeks The interviews will be conducted between October 28 2008 and November 8 2008 If you would like to participate in our survey or interview or get more information please c
63. sleeping times numbers of diapers consumed and free form notes on each of the subjects The development phase focused on turning the design of the previous phase into a real program This phase was broken up into several iterations The first iteration focused on creating iii the basic application and a subset of requirements that we felt were the most important to the functioning and usability of the program This iteration had the ability to store and retrieve records of all the types listed The records were stored in static tables The second iteration added the ability to edit and delete records We also changed the growth tables to no longer accept age values for the child and instead had them calculated based on the date By the third and final iteration we included the ability to chart feeding and sleeping times over the course of a day We also included a large number of bug fixes in the third iteration The largest problems of the development phase were caused by the design omitting or improperly implementing features Our final phase was the evaluation phase In this phase we concerned ourselves with acquiring a measure by our target audience of the usability of our software Like the requirements analysis phase we created a survey The new survey contained a number of questions focused on getting a quantitative measurement of the application and its functionality For the most part those surveyed responded positively to the app
64. targeted application for our project There are many possible target user bases for such an application but we have chosen parents caretakers of infants as our targets We have chosen this group of people because they need to maintain important records associated with the healthcare of their infants a need which a PHR application by nature is well suited to satisfy 11 This is also a large target group with the U S birth rate being well over 4 million per year 12 This means that the potential for impact of an application made specifically for this group should be high and it should also be conducive to our recruitment of research participants belonging to the group Ideally our goal in this project is to create an application that is as good as if not better than any paper based alternatives for record keeping Our application will help new parents keep 2 better records more efficiently Since the amount of records that need to be kept about a newborn can be quite large a common electronic repository for the records will help keep them together and organized Our application will also serve to help our target audience become acclimated to using a PHR system It will allow users to first make use of PHRs with an application that models familiar objects or constructs in its interface e g a chart or table to maximize ease of use The users then will not have to use a larger more complex PHR system until they are prepared for it an
65. tehr docs phrwhitepaperdraftvfinal pdf dbp 34 LC Denton Fall 2001 Will Patients Use Electronic Personal Health Records Responses from a Real Life Experience Journal of Healthcare Information Management 15 3 251 259 Retrieved April 13 2009 from Will Patients Use Electronic Personal Health Records Responses from a Real Life Experience 35 S Endsley D Kibbe A Linares and K Colarafi May 2006 An Introduction to Personal Health Records Family Practice Management Retrieved October 7 2008 from http www aafp org fpm 20060500 57anin html 36 E Meyer Feb 2008 Public Health Record Analysis Report Florida State University Retrieved October 7 2008 from http 2007 ispace ci fsu edu elm06d IR worksamples AdvHealthInformatics PHRAnalysi s pdf 37 E Kim M Wang C Lau and Y Kim Sep 2004 Application and Evaluation of Personal Health Information Management System Report University of Washington Retrieved April 13 2009 from http ieeexplore ieee org stamp stamp jsp tp amp arnumber 1403891 38 T Reinke Jan 2007 Rise of the PHR Managed Care Retrieved October 6 2008 from http www managedcaremag com archives 0701 0701 phr html 39 X Huang Spring 2004 Personal Health Record PHR Keeping Report University of Maryland Retrieved October 6 2008 from http 64 233 179 104 scholar hl en amp lr amp q cache fx 1dD4zjxjgJ www cs umd edu hcil iH ealth phr pdf phr usage 40 A N
66. the experimental procedures at any time they see fit By signing below you acknowledge that you have been informed about and consent to be a participant in the study described above Make sure that your questions are answered to your satisfaction before signing You are entitled to retain a copy of this consent agreement Date Study Participant Signature Study Participant Name Please print Date Signature of Person who explained this study 57 Appendix F Application Evaluation Survey Part 1 System Usability Please circle the number that best represents you opinion on a 1 5 scale l Ithink that I would like to use this system frequently Strongly Disagree Strongly Agree 1 2 3 4 5 I found the system unnecessarily complex Strongly Disagree Strongly Agree 1 2 3 4 5 Ithought the system was easy to use Strongly Disagree Strongly Agree 1 2 3 4 5 I think that I would need the support of a technical person to be able to use this system Strongly Disagree Strongly Agree 1 2 3 4 3 I found the various functions in this system were well integrated Strongly Disagree Strongly Agree 1 2 3 4 5 I thought there was too much inconsistency in this system Strongly Disagree Strongly Agree 1 2 3 4 5 58 7 lI would imagine that most people would learn to use this system very quickly Strongly Disagree Strongly Agree 1 2 3 4 5 8 I found the system very cumberso
67. the first generation who will spend their entire lives with electronic PHRs They are the ones that will have the greatest access to them as they grow up By starting the PHR of an infant early we allow the child to have a fuller record in the future We also hope to acclimate the child to keeping medical records online From the cradle the health of the child will be logged in electronic databases As the infant grows up he or she will accept all records being electronic as the modern and correct way to do this Our application serves to start up this goal To develop our application we followed a rapid application development process and more specifically a prototyping based methodology This approach allowed us to implement a significant subset of our requirements while keeping to a very tight time frame Our life cycle went through a few major phases The first was requirements gathering It was followed by an application and system design We then worked on developing the application in several major iterations Finally we had our target audience evaluate our application to see if it fulfilled their expectations ii To gather our requirements we created a survey that was distributed to personal acquaintances who had new born children as well as participants of the REACH program The survey was composed of 23 questions about the acceptability of electronic health records and how records were currently being kept The questions were concei
68. ties for data manipulation however tethered PHRs may tend to offer more restricted capabilities to the user than other types 18 Given this background information we can begin to address the actual impact of personal health records beginning with an examination of how willing people are to actually use an electronic PHR Here is a summary of a study on the matter 34 A retiring doctor offered 1 000 patients copies of a free standing electronic PHR program along with copies of their own records exported from the practice s EHR to be imported to the PHR program There were 330 patients who accepted the offer Ten months later the doctor surveyed those who had accepted There were 136 who responded to the survey and here are some pertinent results 34 50 had made use of the PHR while 52 stated they had not 49 of those who had used the PHR said that it was easy to use 11 of those who had not used the PHR said that they did not understand the software or that it seemed too difficult of the nonusers 46 planned to use it when the time comes 113 stated they felt that people should maintain personal health records 63 stated they would not prefer to keep their records on the Internet rather than on their own computer while 4 stated they would prefer the Internet 61 stated they would not keep their complete personal records in an Internet based record while 43 said that they would those who would not keep Inter
69. to edit the data was not straightforward In order to be able to delete an entry so a replacement can be inserted we needed to be able to uniquely identify it in the raw notice board stream The logical place to store such a unique identifier would be the version ID field of the feed entry The field is defined as a unique identifier that should be edited whenever the entry is modified It is also a field that Google Health will edit when it is processing the data internally 62 Unfortunately it turned out that it also not stored on the server The next field that we tried to use to store the identifier was the id field of the entry which is meant to uniquely identify it 62 We rewrote the system to store the unique key in that and it still did not work Upon a careful inspection it became very evident that the value that we where submitting to the API was not the value it was giving back to us Luckily it seemed that the value that it returned was unique for each entry and stayed the same every time you pulled it off Google Health With the unique identifier set up deleting and replacing data points was plausible The third iteration was worked on for April 5th In it we focused on adding additional displaying capabilities to the user interface We created the ability to chart sleeping and feeding schedules in a table with the date on one axis and whether the infant slept during that time on the other In the data store we stopped storing th
70. tudy is to gather demographic information and other input from caretakers of infants to be used in determining desirable features and characteristics of a software application for managing health records for infants Procedures to be followed We will provide you with a survey either in print form by email or on the web The anticipated starting date for this study when the survey will become available is October 28 The survey will last for two weeks following the start date during which time you may complete the survey and return your responses to us Completing the survey should not take more than 30 minutes To avoid concerns about the security of digital information we request that you return your responses to the survey in print form so as to ensure the confidentiality of your personal identifying information 45 Risks to study participants There are no apparent risks associated with this study The only foreseeable cause for your discomfort in this study would be answering a question that makes you uncomfortable You may choose not to answer any question that makes you uncomfortable Benefits to research participants and others There is no direct benefit to you as a result of this study Record keeping and confidentiality Records of your participation in this study will be held confidential so far as permitted by law However the study investigators and under certain circumstances the Worcester Polytechnic Institute Institutiona
71. ure costs of this coverage any sort of head start could prove beneficial 29 30 Therefore one potential path of progress is to create technology for use by parents in relation to their young children in the hope that such technologies and others could go on to follow and benefit a child throughout their life One such potential technology is that of PHRs If we consider our target users to be parents of young children and our chosen technology to be PHRs we can attempt to determine the size of our potential user population 7 According to the National Center for Health Statistics there were 4 27 million births in the U S in 2006 with preliminary estimates for the 2007 birthrate at 4 32 million 12 This means that if our primary user population is to be parents of children from 0 3 years old then the population size may be on the order of up to 12 13 million potential users in the U S with a strict cutoff at exactly 3 years of age These statistics also indicate that approximately half of these births are to parents 20 29 years old So a distinct majority of new parents taking into account younger parents as well are young enough that they have a high likelihood of being familiar with computers allowing them to benefit from computer based PHR applications 31 2 3 Personal Health Record PHR In contrast to all of the formal definitions and specifications produced for EHRs the concept of PHRs in general is more varied A P
72. ut penalty or loss of other benefits The project investigators retain the right to cancel or postpone the experimental procedures at any time they see fit By signing below you acknowledge that you have been informed about and consent to be a participant in the study described above Make sure that your questions are answered to your satisfaction before signing You are entitled to retain a copy of this consent agreement Date Study Participant Signature Study Participant Name Please print Date Signature of Person who explained this study 47 Appendix C Requirements Gathering Survey Part 1 Demographic Data eae ndm Name Gender Age Occupation Highest level of Education Less than high school High school Some undergraduate education Bachelor s Degree Some post graduate education Master s degree or higher How many children do you have a Please tell us the ages of your children monogs Part 2 General Survey 1 I feel very comfortable with using a computer Strongly Disagree Strongly Agree 1 2 3 4 5 Ifeel very comfortable with using the internet Strongly Disagree Strongly Agree 1 2 3 4 5 Do you have an internet connection at home and if so what is the approximate speed of it a Ihavea high speed connection cable DSL or better b Ihave a dial up connection c Ido not have an internet connection at home Would you trust a third party company such as Google or Micros
73. ve Employee Perspectives of Employer Sponsored Personal Health Record PHR Systems pp 5 8 42nd Hawaii International Conference on System Sciences 45 C Stedman Mar 2008 E health consortium hopes second time is the charm for patients data repository plan Computerworld Retrieved April 13 2009 from http www computerworld com action article do command viewarticlebasic amp articleid 90 67881 46 K D Mandl W W Simons W C R Crawford and J M Abbett Jul 2007 Indivo a personally controlled health record for health information exchange and communication BMC Medical Informatics and Decision Making Retrieved April 13 2009 from http www biomedcentral com 1472 6947 7 25 47 M K McGee Sep 2007 Intel Wal Mart And Others Refocus To Get Worker E Health Record System Running Information Week Retrieved September 23 2008 from http www informationweek com news security showarticle jhtml articleid 201806269 48 S Barlas Oct 2007 Microsoft Offers Healthy Solution Introduces Health Vault Software and Services Platform EContent Retrieved September 22 2008 from http www econtentmag com articles articlereader aspx articleid 39821 49 E Schonfeld Oct 2007 Microsoft Beats Google To Online Health Records With HealthVault TechCrunch Retrieved September 24 2008 from http www techcrunch com 2007 10 04 microsoft beats google to online health records with healthvault
74. ved as a way to understand the needs of the users so that we could develop an application that would address them We received four responses to our survey The most important non functional requirements were usability security and portability The most common types of records to be stored were height weight head circumference immunizations and feeding information The basic functional requirements were the ability to store and retrieve records as well as free form text notes and the ability to represent them in some way that is easy to interpret and manipulate In the design phase we had two major tasks One was to come up with a solid system design that would be able to handle the needs of our application and the data that it would be using The other major task was to choose the basic details of our application such as programming language and major screens In this phase we dealt with concerns like data security and application portability At the end of this phase we had a solid design of what the application would look like and the basic flow of operation The design we settled on was to use Java as the programming language and used Google Health to store records Our application would provide an interface to enter view edit and delete data stored in tables The data would be stored as a series of entries on the Google Health notice board of the user The record types that we focused on were growth data immunization records feeding and
75. we were to choose it as our platform The third and best candidate for our project is Google Health It is the newcomer to the field having been launched in May of 2008 It is also the one with the fewest third party repositories from which to get user records They started with eight partners with the majority providing prescription records and have only attracted a few new partners in the short time that the product has been available for the public At the current time the user needs to enter many records in manually Google makes up for it by making the process easy Like Health Vault Google Health offers preset forms for conditions medications allergies procedures test results and immunizations but unlike the competition Google Health offers users a list from which to choose the condition or treatment and the user is only asked to fill in details This style of user interaction is typical of Google Health which in general offers a better and easier user experience with features like directories of medical professionals and a reference library of medical conditions Google also includes many third party applications that can use the records in the profile 50 Overall the Google strategy is to offer a product that is easier to use and to include an open and easily accessible API 51 This API sets Google up to be a very good platform for our work The API is very thoroughly documented and available in a couple 14 different pr
76. with other records It also supports Google data formats and Continuity of Care Record data standards 52 potentially allowing records that we create to be used by any other tools that could arise in the future Our plan was to further study the impact of personal health records by developing a PHR application targeted for use by a specific community In our research we discovered no available electronic PHR applications that are specifically intended to handle records for infants Such an application would appear to be very useful to many people given the amount and importance of records necessary to keep for infants and could thus have a considerable impact 11 Therefore we planned to produce an application designed to serve this purpose To develop this application we first had to decide on what type of software development life cycle SDLC to use Ideally to create a fully functional application an iterative SDLC would be desirable allowing the application to after initial development be repeatedly evaluated and refined 53 However given that in our limited time frame for the project we would not have time for repeated development iterations this process was ruled out Another SDLC we considered was the traditional waterfall development model as this model is somewhat like a single iteration of the iterative development process 53 However in 16 the waterfall model the developmental phases are supposed to be rigid
77. ww google com health Follow the link labeled Create a new account now and fill in the form Starting the program Peles l User Name InfantCare jar Password Login 3 1 Double click InfantCare jar to start the program 2 Enter your infant s Google Health user name and password into the pop up box 3 Click the login button 62 Daily Activities The daily activities screen is used to track the number of wet and soiled diapers and the sleeping and eating schedule of your infant The screen is the first one you come to when you start the application You can return to it at any time by selecting the leftmost tab labeled Daily Activities at the top of the window 63 Posting a New Daily Activity LITTTNEENNNNENERRR o p s Daily Notes Growth Table Immunizations Wet diaper count Clear all Fields Soiled diaper count h Chart activity data over time Feeding Times Sleeping Times Day 3 Night Day Night 6am 6PM Team A Fem 74M 7PM 7am 7PM 84M 8PM 8am 8PM 94M 9PM 94M 9PM 104m 10PM 104m 10PM 114M 11PM 114M 11PM 12PM 124M 12PM 124M 1PM 14M 1PM 1am 2PM 24M 2PM 24M 3PM 34M 3PM 34m 4PM 4am 4PM 4am SPM 5am SPM sam Save new chart under this date 5 _ she Display chart for this date Y Display Edit currently displayed chart Delete currently displyed

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