A research scoping study for the Chief Research Officer for Public Health, Research and Development Department of Health and the i4i Programme of the National Institutes for

A research scoping study for the Chief Research Officer for Public Health,
Research and Development Department of Health and the i4i Programme of
the National Institutes for Health Research

Mark Outhwaite, Director HOIP CIC
Email:m ar k. out hwait e@ hoi p. eu
Tel: +44 (0)203 2399438 Mob: +44 (0) 7768131770

Mark Outhwaite: Project Lead
Annop Singh: Researcher
Denis Carroll: Researcher
Professor Andy Marsh: Researcher and Academic Lead

We are grateful for the support of Richard Foggie Assistant Director, Electronics Innovation EITSU at the Department for Business Enterprise and Regulatory Reform (DBERR) for his support in sponsoring the workshops at the Future Focus Facility at DBERR and for his advice during the project

1 Executive Summary............................................................................................................ 4
1.1 Introduction.................................................................................................................. 4
1.2 Policy context.............................................................................................................. 4
1.3 The web-based PHR \u2013 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 \u2013 setting the scene.......................................................................... 16
3.1 The wider context...................................................................................................... 16
3.2 Web 2.0 \u2013 the architecture of participation................................................................. 17
3.3 Health 2.0.................................................................................................................. 18
3.4 Medicine 2.0.............................................................................................................. 19
3.5 Definitions of the PHR \u2013 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 \u2013 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 \u2013 \u2018the train has left the station\u2019.................................................................... 26
5.2 Respondents\u2019 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