Eysenbach: Personal Health Applications and Personal Health Records

Slideshow Transcript

1. Slide 1: Track Keynote Presentation: From Patient Needs to Personal Health Applications Associate Professor  Gunther Gunther Department of Health Policy, Management and Eysenbach MD MPH Eysenbach MD MPH Evaluation, University of Toronto; Senior Scientist,  Centre for Global eHealth Innovation, Division of Medical Decision Making and Health Care Research;  Toronto General Research Institute of the UHN, Toronto General Hospital, Canada Visiting Professor, Faculty of Behavioural Sciences University of Twente, The Netherlands
2. Slide 2: Talk Outline – An international perspective on the importance of PHR/PHA development & research – Patient needs (and other drivers of PHR) – Emerging technological trends • PHR 2.0 – impact of Web 2.0 approaches on our field
3. Slide 3: A shameless plug for the #2 ranked health informatics journal… www.jmir.org
4. Slide 4: Journal of Medical Internet Research (JMIR) [www.jmir.org] • Now in its 10th publishing year • Independently published • #2/20 ranked journal in medical informatics by ISI journal impact factor (2.9), #6/57 in health services research • Approx 50.000 readers per month, 20.000 TOC alert subscribers • Open Access (HTML freely accessible), no subscription necessary to read articles, first OA journal in this field • Article Processing Fee for submitting authors from non-member institutions • Individual and institutional memberships for value-added services (PDFs) and article processing fee (APF) waivers • Focus on Internet/web-applications and consumer health informatics incl. PHRs / Personal Health Applications Is your department/unit already an institutional member?
5. Slide 5: A “global” perspective…(?) Gunther’s World
6. Slide 6: World Obesity Map http://www.iaso.org/docs/pdf/review2003.pdf http://www.webcitation.org/5VvwTOs3l
7. Slide 7: World Carbon Emissions Map
8. Slide 8: World Happiness Map
9. Slide 9: AHIMA Definition of PHR \"The personal health record (PHR) is an electronic, universally available, lifelong resource of health information needed by individuals to make health decisions. Individuals own and manage the information in the PHR, which comes from the health care provider and the individual. The PHR is maintained in a secure and private environment, with the individual determining the rights of access. The PHR is separate from and does not replace the legal record of the provider.“ AHIMA e-HIM Personal Health Record Work Group. \"The Role of the Personal Health Record in the EHR.\" Journal of AHIMA 76, no.7 (July-August 2005): 64A-D. http://www.webcitation.org/5Vlj7zE7E
10. Slide 10: PHRs – Markle Definition “\"The Personal Health Record (PHR) is an Internet-based set of tools that allows people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it. PHRs offer an integrated and comprehensive view of health information, including information people generate themselves such as symptoms and medication use, information from doctors such as diagnoses and test results, and information from their pharmacies and insurance companies. (…) People can use their PHR as a communications hub: to send email to doctors, transfer information to specialists, receive test results and access online self-help tools. \" Markle Foundation ( http://www.markle.org/downloadable_assets/final_phwg_report1.pdf http://www.webcitation.org/5Vmpga1nD )
11. Slide 11: Personal Health Applications • Personal Health Applications (PHA) are tools and services in medical informatics which utilizes information technologies to aid individuals to create their own personal health information. Personal Health Applications are claimed to be the next generation consumer-centric information system that helps improve health care delivery, self-management and wellness by providing clear and complete information, which increases understanding, competence and awareness. Personal Health Application is now part of the Medicine 2.0 movement. URL:http://en.wikipedia.org/wiki/Personal_Health_Application. Accessed: 2008-05-29. (Archived by WebCite® at http://www.webcitation.org/5YB9yJgp2)
12. Slide 12: PHA Platforms • Google Health • Microsoft Healthvault • Dossia • RWJF Project HealthDesign (?) • Tolven (?)
13. Slide 13: Personal Health Records / Personal Health Applications Personal Health Application A (e.g. Web-based behavior change program) Personal Health Application B (e.g. Web-based behavior change program) PHR / PHA Platform EMR Domotics Medical/ Home care devices Consumer electronics
14. Slide 14: A “global” scan on the state of PHRs internationally
15. Slide 15: Pubmed search for \"personal health record\" OR \"personal health records\" OR \"personally controlled health record“ N=142 hits (incl 12 reviews) • 3 from the Netherlands • 2 Australia • 2 Germany • 2 Norway • 1 Canada • 1 Finland • 1 UK • 1 FR • 3 from Belgium (EU) … the rest from the US !
16. Slide 16: “Gelbes Untersuchungsheft” – (paper-PHR, Germany)
17. Slide 19: National Program for IT in the NHS
18. Slide 20: Paper-based personal health record (Canada)
19. Slide 22: Ontario: SIMS Partnership Patient Portal Source: Matt Anderson, CIO SIMS Partnership
20. Slide 23: Canadian Committee for Patient Accessible Electronic Health Records (CCPAEHR) Urowitz et al. Is Canada ready for patient accessible electronic health records? A National Scan. BMC Medical Informatics and Decision Making (forthcoming)
21. Slide 24: The Netherlands have more to offer than tulips and windmills…
22. Slide 25: Source: Prof Jan Kremer http://www.webcitation.org/5XwJY3Wkg http://www.epddag.nl/2007/ppt2007/0pres-j.kremer.pdf
23. Slide 26: • Create a Health Equalities Commission • Create a national preventative health agency (akin to “VicHealth”) • Set-up a regional health partnership (akin to an “ASEAN” model) • Ensure evidence-based allocation of resources • Make healthy food choices easy • Complete rethink of the shape of the health workforce • Promote better translation of Australia’s research efforts into commercial and health outcomes • Create a “Healthbook” web-based personal health record (like a Facebook) http://www.webcitation.org/5YB3bqeB9
24. Slide 27: Obesity Traditional hospital-based health care system
25. Slide 28: Eysenbach G: Consumer health informatics. BMJ 2000;320:1713-16
26. Slide 29: The importance of behavioral factors and preventive medicine • More than one third of cancer deaths are attributable to nine modifiable risk factors • The 9 factors are: 1) smoking, 2) high body mass index, 3) low fruit and vegetable intake, 4) physical inactivity, 5) alcohol use, 6) unsafe sex, 7) urban air pollution, 8) indoor use of solid fuels, and 9) injections from healthcare settings contaminated with hepatitis B or C virus. Lancet. 2005;366:1784-1793
27. Slide 30: The importance of behavior change and prevention… Between 1991-2003, cancer mortality decreased by 12% 40% of this decrease is attributed to smoking cessation Thun, M. J et al. Tob Control 2006;15:345-347 http://tobaccocontrol.bmj.com/cgi/content/full/15/5/345 Copyright ©2006 BMJ Publishing Group Ltd.
28. Slide 31: eHealth can support behavior change and prevention See also JMIR Theme Issue on Web-assisted Tobacco Interventions (forthcoming - 4th quarter /2008)
29. Slide 32: Promises/Drivers of PHR (1) 1. Public health, prevention, behavior change • PHRs as an entry point for behavior change programs (e.g. smoking cessation, obesity) • PHRs as an entry point for customized health recommendations • PHRs can be used as surveillance tools Evaluation of Influenza Prevention in the Workplace U Florence T Bourgeois, William Simons, Karen Olson, John Brownstein, Kenneth Mandl J Med Internet Res 2008 (Mar 14); 10(1):e5
30. Slide 33: Promises/Drivers of PHR (2) 1. Preventing Medical Errors “The single most important way you can help to prevent errors is to be an active member of your health care team. That means taking part in every decision about your health care. Research shows that patients who are more involved with their care tend to get better results.“ (AHRQ) PHRs can help to engage patients in their care.
31. Slide 34: Promises/Drivers of PHR (3) 1. Increasing compliance (adherence) and improving outcomes Transparency ↑ → Trust ↑ → Adherence ↑ → Outcomes ↑ Satisfaction ↑ Costs ↓ → Knowledge ↑ Data ↑ Self-efficacy ↑ Patient-doctor communication ↑ Behavior Change ↑ contextualize Eysenbach, 2008
32. Slide 35: Promises/Drivers of PHR (4) 1. Aging population, rise in chronic conditions are major cost drivers => PHRs facilitate home care, self-management, informal caregiving Romanov Comission Interim Report, 2002
33. Slide 36: • focussing on preventative health care and health promotion, to help keep Australians healthy and out of hospital
34. Slide 37: Promises/Drivers of PHR (5) 1. Research • PHRs may be a particularly valuable to study relationships between health behaviour and outcomes • Obtaining consent (opt-in) for secondary data use requires patient access to their personal health information 1. PHR foster adoption of EHR • PHRs highlight interoperability problems • Entering of major players into the market (Google, Microsoft) will facilitate adoption of standards • PHRs will result in consumer demand / pressure on the government and health care providers which may in turn foster EHR adoption
35. Slide 38: But what drives / motivates consumers + patients? • Desire to maintain and achieve health • Desire to “organize” their health information • (sometimes) mistrust in the medical system • Desire for autonomy Motivation Healthy Acute Condition Chronic/Severe Condition
36. Slide 39: Adler KG Web Portals in Primary Care: An Evaluation of Patient Readiness and Willingness to Pay for Online Services J Med Internet Res 2006;8(4):e26 <URL: http://www.jmir.org/2006/4/e26/>
37. Slide 40: Patient motivation is often limited (and short-lived) => Attrition RCT open Eysenbach G The Law of Attrition J Med Internet Res 2005;7(1):e11 <URL: http://www.jmir.org/2005/1/e11/>
38. Slide 41: Essential: Needs assessment and usability testing (iterative & ongoing) • Focus Groups • Usability lab • In-depth interviews with stakeholders
39. Slide 42: Gaps between patient and provider needs / expectations • Expectations of Patients and Physicians Regarding Patient-Accessib Stephen E Ross, MD, Jamie Todd, MS-IV, Laurie A Moore, MPH, Brenda L Beaty, MSPH, Loretta Wittevrongel, Chen-Tan Lin, MD J Med Internet Res 2005 (May 24); 7(2):e13 – “Patients are particularly likely to anticipate that shared records will be empowering (...). Physicians, by contrast, are especially likely to anticipate that laboratory results will confuse patients and that shared records will make patients worry more. “
40. Slide 43: Gaps between patient and provider needs / expectations Credits: Selina Brudnicki & Claudette DeLenardo
41. Slide 44: Gaps between patient and provider needs / expectations Credits: Selina Brudnicki & Claudette DeLenardo
42. Slide 45: People will not enter health information to a significant degree…
43. Slide 46: …(perhaps there are some exceptions)…
44. Slide 47: …rather, the PHR (or PHA platform) must be populated seamlessly and effortlessly… Personal Monitoring Tools Mobile technologies, SMS Domotics, PHR / Ambient, pervasive computing, PHA Platform Intelligent car Applications with geospatial awareness Natural speech interfaces Web 2.0 (collaborative, data entered by others) Electronic Medical Record (Provider)
45. Slide 48: Sorbi MJ, Mak SB, Houtveen JH, Kleiboer AM, van Doornen LJP Mobile Web-Based Monitoring and Coaching: Feasibility in Chronic Migraine J Med Internet Res 2007;9(5):e38 <URL: http://www.jmir.org/2007/5/e38/>
46. Slide 49: Intelligent spoon
47. Slide 52: “Since it can be such a hassle to make phone calls every day just to check the status of a remote parent with nothing else to talk about, a system that monitors the life pattern of those parents in a casual manner was invented in response to the needs of family members living apart.”
48. Slide 53: “I wouldn't want to track (a variable or in general) because tracking would… “ • Not apply to me: (eg, smoking, alcohol drinking, pets) • Not provide new information: (ie, “I already know this”) • Not provide valuable information • Provide too much information (information overload) • Threaten self-image (“would feel criticized”) • Not provide actionable information • Lead to social conflict • Promote obsessive or unhealthy reactions: (“becoming obsessed”) • Force too much structure (“Approaching life too analytically”) • Not be suitable for particular activity or behavior • Be too complicated, error-prone, or disruptive Beaudin JS, Intille SS, Morris ME To Track or Not to Track: User Reactions to Concepts in Longitudinal Health Monitoring J Med Internet Res 2006;8(4):e29 <URL: http://www.jmir.org/2006/4/e29/>
49. Slide 54: User reactions to tracking • there is great variability in what factors about their life people would want to track • what people wish to track will change over time, based upon their age, life circumstances, interactions with friends and family, health status, and general curiosity • ubiquitous “monitoring” systems may be more readily adopted by end users if they are developed as tools for personalized, longitudinal self-investigation that primarily help end users, instead of or in addition to medical professionals, learn about the conditions and variables that impact their social, cognitive, and physical health. Beaudin JS, Intille SS, Morris ME To Track or Not to Track: User Reactions to Concepts in Longitudinal Health Monitoring J Med Internet Res 2006;8(4):e29 <URL: http://www.jmir.org/2006/4/e29/>
50. Slide 55: Read only EMR PHR “Tethered” PHR/ PAEHR Read+Write/Annotate EMR PHR “stand-alone” PHR PHR © Gunther Eysenbach, CC-BY Based on: Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. J Am Med Inform Assoc. 2006 Mar-Apr;13(2):121-6
51. Slide 56: “interconnected” PHR EMR PHR Different providers PHR EMR PHR © Gunther Eysenbach, CC-BY Based on: Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. J Am Med Inform Assoc. 2006 Mar-Apr;13(2):121-6
52. Slide 57: Records at Financial institutions Personal Finance Records © Gunther Eysenbach, CC-BY
53. Slide 58: From: Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. J Am Med Inform Assoc. 2006 Mar-Apr;13(2):121-6
54. Slide 59: PHR 2.0
55. Slide 60: (credits: Pablo Rivero)
56. Slide 61: “the doctor is not an expert in the experience of illness, but in the identification of it“ . Davidson KP, Pennebaker JW. Virtual narratives: Illness representations in on-line support groups. In: Petrie KJ, Weinman JA, editors. Perceptions of Health and Illness. Amsterdam: Harwood Academic Publishers; 1997. p. 463-86
57. Slide 62: http://en.wikipedia.org/wiki/Image:Web20_en.png
58. Slide 63: Source: http://web2.wsj2.com/
59. Slide 64: www.medicine20congress.com, Toronto, Sept 4-5th, 2008
60. Slide 65: Consumer / Patient Medicine 2.0 (“next generation medicine”) Virtual Full paper will appear as: Communities Gunther Eysenbach. Medicine 2.0. (peer-to-peer) J Med Internet Res 2008 (in press) http://dx.doi.org/ 10.2196/jmir.1030 Health 2.0 DOI:10.2196/jmir.1030 Revolution Health PatientsLikeMe HealthBook Google Health Personal Health AJAX Blogs Record RSS Wikis 2.0 Web 2.0 Technologies & Approaches HealthVault E-learning RDF, Semantic Web XML JMIR ALIVE Virtual Worlds BMC Sermo Peer-review 2.0 WiserWiki PLoS One Professional eDoctr WebCite Communities PeerClip Connotea Science 2.0 CiteULike (peer-to-peer) MDPIXX Dissect Medicine BioWizard caBIG HealthMap Health Professionals Biomedical Researchers
61. Slide 66: Disintermediation / Apomediation Personal General health Patient data External health information evidence information Relevant Health Record +credible Medical knowledge Information Irrelevant Patient Irrelevant inaccurate Literature accessible Information Mass Media electronic Internet health records Physician (health professionals, librarians) as “Apomediaries” intermediary Patient
62. Slide 67: Apomediation defined • “disintermediation” through digital technologies = bypassing the gatekeeper, role of “human” intermediaries diminishes or changes • consumers and patients are finding new ways to locate relevant and credible information. • The agents that replace intermediaries in the digital media context may be called “apomediaries,” – Intermediaries mediate by standing “in between” (inter-) consumers and the services or information they seek, – Apomediaries “stand by” (apo-) and provide added value from the outside, steering consumers to relevant and high-quality information without being a requirement to obtain the information or service in the first place (Eysenbach, 2007). – While the traditional intermediary is the “expert,” apomediaries consist of a broader networked community including peers, experts, parents, teachers, and the like, who are networked in a digital environment, or networked tools (“Web 2.0”). Eysenbach, http://hdl.handle.net/1807/9906
63. Slide 68: Dynamic Intermediation/Disintermediation/Apomediation (DIDA) Model (Eysenbach, 2007) Empowerment - decreased reliance on experts Knowledge Self-efficacy Apomediation replacing Autonomy the intermediary reliance on authorities/ Success experts Intermediary Failure Gunther Eysenbach. Credibility of Health Information and Digital Media: New Perspectives and Implications for Youth. In: Miriam J. Metzger & Andrew J. Flanagin (eds.). Digital Media, Youth, and Credibility. MacArthur Foundation Series on Digital Media and Learning. MIT Press 2007 http://www.mitpressjournals.org/doi/pdf/10.1162/dmal.9780262562324.123
64. Slide 69: Implications of the apomediation model for PHRs • Some patients will still prefer the “intermediation” (gatekeeper) approach, while others will prefer a “bottom-up” apomediation model (e.g. Web 2.0 approaches) • Knowledge, self-efficacy, desire for autonomy are hypothesized to be predictors for what model is chosen in a given situation • Situation-specific!
65. Slide 70: Characteristics of PHR 2.0 “PHR 2.0” have “Web 2.0-esk” design features that enable / facilitate participation, collaboration, openess, and apomediation – Model social relationships between individuals – Open standards – Acknowledge consumers as “prosumers” – Reputation management, collaborative filtering – Ability for consumers to share parts of their health records with anybody
66. Slide 71: Health Information is tightly protected EMR PHR Different providers PHR EMR PHR © Gunther Eysenbach, CC-BY
67. Slide 72: People want to SHARE some of their personal information Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK How Cancer Survivors Provide Support on Cancer-Related Internet Mailing Lists J Med Internet Res 2007;9(2):e12 <URL: http://www.jmir.org/2007/2/e12/>
68. Slide 73: Another example for sharing personal health information
69. Slide 74: Yet another example of an individual happy to share his health record…
70. Slide 75: Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data Jeana H Frost, Michael P. Massagli J Med Internet Res 2008 (May 27); 10(3):e15
71. Slide 76: PHR 2.0 EMR PHR Other peoples’ PHR PHR Other peoples’ PHR EMR PHR Other peoples’ PHR Different providers Community © Gunther Eysenbach, CC-BY
72. Slide 77: PHR 2.0 Transparency ↑ → Trust ↑ → Adherence ↑ → Outcomes ↑ Satisfaction ↑ Costs ↓ → Knowledge ↑ Data ↑ Self-efficacy ↑ Patient-doctor communication ↑ Behavior Change ↑ contextualize Social support TRA Community Reduces the burden on health professionals and other intermediaries
73. Slide 78: Some other implications of Web 2.0: Shifting expectations “[People from the] Google Generation are impatient and have zero tolerance for delay, information and entertainment needs must be fulfilled immediately ( e.g. Johnson, 2006: Shih and Allen 2006)” Information Behaviour of the Researcher of the Future – The Literature on Young People and Their Information Behavior URL:http://www.ucl.ac.uk/slais/research/ciber/downloads/GG%20Work%20Package%20II.pdf. Accessed: 2008-04-09. (Archived by WebCite® at http://www.webcitation.org/5WxqwuH4g)
74. Slide 79: What does this all mean for health care / eHealth (1) ? • Consumer Expectations ! – Web 2.0 savvy consumers will push the envelope – Just providing a institutions- specific “portal” (or tethered PHR) will not be enough – the next generation of consumers will quickly demand to be able to do more with their data – Patients 2.0 will demand full control over their data (as a minimum, XML export, ideally an API!)
75. Slide 80: What does this all mean for health care / eHealth (2) ? • Importance of Users / Consumers – Encourage participation – users add value – Trust your users as co-developers – Personal health information entered by users is trustworthy! – Facilitate network effects • Cooperate, don’t control – Consumers as prosumers (producers of co-information) – Towards decentralized quality control – Peers and Web 2.0 tools (recommender systems, collaborative filtering etc.) will play a powerful role in filtering quality information (decentralized model of quality control) APOMEDIARIES instead of INTERMEDIARIES
76. Slide 81: Some research questions around PHR 2.0 • To what degree and under which circumstances can “apomediation” replace “intermediation” • Will building communities within and around PHRs lead to higher consumer engagement, provide additional motivation to enter information, and to more effective behaviour change? • Will PHR 2.0 approaches reduce the burden on providers as sole producers of education material, information, and gatekeepers?
77. Slide 82: www.medicine20congress.com, Toronto, Sept 4-5th, 2008
78. Slide 83: Thank you! Dr G. Eysenbach, Email: geysenba@uhnres.utoronto.ca or @gmail.com, Journal: www.jmir.org Funding Change Foundation, Canadian Institutes for Health Research, NSERC, European Union, SSHRC