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The web-based personal health record – research implications for patients,consumers, health services and UKindustry
A research scoping study for the Chief Research Officer forPublic Health, Research and Development Department ofHealth and the i4i Programme of the National Institutes forHealth Research
October 2008
 
 
Web based Personal Health Record – Release Version27 October 2008
 
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DocumentTitleThe web-based personal health record – research implications forpatients, consumers, health services and UK industry
A research scoping study for the Chief Research Officer for Public Health,Research and Development Department of Health and the i4i Programme ofthe National Institutes for Health Research
Prepared for
Dr William Maton-Howarth, Chief Research Officer for Public Health,Research and Development, Department of Health
Prepared by
Mark Outhwaite
Version No
Release version
Date:
27 October 2008
Version controlVersion No Date Change summary Owner
V7 30/09/08 Pre-release approval draft MRCOV8 01/10/08 Pre-release DH approval draft MRCOV9 08/10/08 Finalisation version MRCOFinal 27/10/08 Release version MRCO
Contact details for this report:
Mark Outhwaite, Director HOIP CICEmail:mark.outhwaite@hoip.eu Tel: +44 (0)203 2399438 Mob: +44 (0) 7768131770
 
The research team:
Mark Outhwaite: Project LeadAnnop Singh: ResearcherDenis Carroll: ResearcherProfessor Andy Marsh: Researcher and Academic LeadAll members of the project team are Directors of HOIP CIC
Acknowledgements
We are grateful for the support of Richard Foggie Assistant Director, Electronics InnovationEITSU at the Department for Business Enterprise and Regulatory Reform (DBERR) for hissupport in sponsoring the workshops at the Future Focus Facility at DBERR and for hisadvice during the projectOur thanks also go to those who made a contribution as interviewees, workshop participantsand contributors during the project
 
 
Web based Personal Health Record – Release Version27 October 2008
 
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Table of contents
1 Executive Summary............................................................................................................4
 
1.1 Introduction..................................................................................................................4
 
1.2 Policy context..............................................................................................................4
 
1.3 The web-based PHR – setting the scene.....................................................................4
 
1.4 Perspectives of participants and contributors...............................................................5
 
1.5 The challenge of commissioning and delivering research in web 2.0 timescales...........5
 
1.6 Policy implications and alignment.................................................................................6
 
1.7 Confidentiality, access and trust...................................................................................6
 
1.8 The user/consumer perspective...................................................................................7
 
1.9 The service perspective...............................................................................................7
 
1.10 Technology perspectives...........................................................................................8
 
1.11 Industry perspectives.................................................................................................8
 
2 Summary of research themes.............................................................................................9
 
1 Introduction......................................................................................................................12
 
1.1 Background to the report...........................................................................................12
 
1.2 Methodology..............................................................................................................12
 
2 Policy context...................................................................................................................14
 
2.1 Introduction................................................................................................................14
 
2.2 The Health Informatics review....................................................................................15
 
3 The web-based PHR – setting the scene..........................................................................16
 
3.1 The wider context......................................................................................................16
 
3.2 Web 2.0 – the architecture of participation.................................................................17
 
3.3 Health 2.0..................................................................................................................18
 
3.4 Medicine 2.0..............................................................................................................19
 
3.5 Definitions of the PHR – Personal health record or personal healthcare record..........19
 
3.6 Evolution of the Web-based PHR and Health 2.0.......................................................21
 
3.7 Forward look – Web 3.0 and Health 3.0.....................................................................23
 
4 The perspectives of participants and contributors..............................................................24
 
4.1 Summary - Still early days for UK participants............................................................24
 
4.2 Overview themes from the literature review................................................................24
 
4.3 Visions for the future..................................................................................................24
 
5 The challenge of commissioning and delivering research in web 2.0 timescales................26
 
5.1 Summary – ‘the train has left the station’....................................................................26
 
5.2 Respondents’ perspectives........................................................................................27
 
6 Policy implications and alignment.....................................................................................29
 
6.1 Introduction................................................................................................................29
 
6.2 Data Protection & EU Law.........................................................................................29
 
6.3 Setting PHR and Health 2.0 in the wider policy context..............................................30
 
6.4 Policy research themes..............................................................................................30
 
6.5 Participant perspectives.............................................................................................30
 
7 Confidentiality, access and trust.......................................................................................32
 
7.1 Data protection context..............................................................................................32
 
7.2 Supporting the user...................................................................................................32
 
7.3 Trust..........................................................................................................................33
 
7.4 The record after death...............................................................................................35
 
7.5 Participant perspectives.............................................................................................35
 
8 The user/consumer perspective........................................................................................36
 
8.1 Who are the potential users of PHR and how will they use it?....................................36
 
8.2 Social Networking in Health 2.0.................................................................................37
 
8.3 Disability and accessibility of the PHR........................................................................38
 
8.4 Participant perspectives.............................................................................................39
 
9 The service perspective....................................................................................................40
 
9.1 Challenges and opportunities for clinicians.................................................................40
 
9.2 Service impacts and benefits - the asymmetrical challenge of PHR and Health 2.0....41
 
9.3 Implications for Public Health.....................................................................................42
 
9.4 Implications for researchers.......................................................................................42
 
9.5 Health Across boundaries - health tourism.................................................................43
 
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