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The Evolution of Personal Health Records and their Role for Self-management: A Literature Review ¡ Monika A. JOHANSEN, Eva HENRIKSEN Norwegian Centre for Integrated Care and Telemedicine, University Hospital of North Norway, Tromsø, Norway E-mail: monika.johansen@telemed.no

CONTENT 1. INTRODUCTION i. Self-management ii. PHR 2. METHOD 3. RESULTS 4. SUMMING UP

SELF-MANAGEMENT • AIM: increase patients’ confidence and their ability to manage their symptoms and illness • CORE elements: education, learn problem solving, establish skills to overcome barriers, cooperation between patient and provider, and develop action http://www.mazhalaigal.com/images/issues/2013/ mgl201304/im20130447_self-management.jpg plans and carry them out (Lorig and Holman 2003)

SELF-MANAGEMENT http://indrakusumah.com/files/Self- ¡ Management.jpg Demonstrated positive effect on patients with chronic conditions (Wagner, Austin et al. 2001) A review of 67 reviews: Self- management have both positive effect on patients’ knowledge, patients’ experience, patients’ use of health services, in addition to effects on health behavior and health status (Coulter 2007) http://integra-leadership.com/press/wp- content/uploads/2011/03/leader-self- management.jpg

SELF-MANAGEMENT A review of 67 reviews: Self-management – demonstrated positive effect on: ¡ Topic ¡ Total ¡ Effects ¡on ¡ Effects ¡on ¡ Effects ¡on ¡use ¡ Effects ¡on ¡ ¡ number ¡ pa7ents’ ¡ pa7ents’ ¡ of ¡health ¡ health ¡ ¡ of ¡ knowledge ¡ experience ¡ services ¡ behavior ¡and ¡ ¡ ¡ reviews ¡ ¡ ¡ health ¡status ¡ ¡ found ¡ Improving self 67 Reported in Reported in Reported in Reported in care and self 19 reviews: 40 reviews: 25 reviews: 50 reviews: management all positive 24 positive, 14 positive, 39 positive, of chronic 11 mixed, 9 mixed, 15 mixed, disease 5 negative 2 negative 6 negative Coulter ¡2007 ¡

PERSONAL HEALTH RECORD (PHR) https://encrypted- http://www.scoutingmagazine.org/ tbn2.gstatic.com/images? https://encrypted-tbn1.gstatic.com/images? issues/0610/art/ill-02.jpg q=tbn:ANd9GcSiH2AjkmP5C q=tbn:ANd9GcSkoDyEn5thgcriOnr_XAUts0 S5sejubl_ObICn4zSneHGnbDyL xn6XtP9zU1BuzX7NxwCe8w QNoNPPwjRJ9jXgwWkEQ • PHR - supposed to offer and stimulate patient self-management (Detmer 2008) • A survey from 2004 involving 2242 USA citizens found that 42 % had used PHRs, but as many as 87 % were paper-based (PRNewswire). • The PHR systems and models developed today are mainly electronic

PERSONAL HEALTH RECORD (PHR) • PHR TODAY: the ability to enter personal health data; to view personal health data, exchange secure messages with providers, schedule appointments, renew prescriptions; decision support; the ability to transfer data to or from an electronic health record (NCVHS, 2006) • PHR is a framework for education of both patients and healthcare providers http://media02.hongkiat.com/iphone-health- app/itriage.jpg • However, patients own their PHRs and control the access to PHRs

PERSONAL HEALTH RECORD (PHR) • Evaluation of 19 standalone PHRs: Standalone PHRs MAINLY DO NOT meet identified patient desires, as a tool for self- management (Fuji 2012) • Detmer 2008: Only the integrated model, with shared access for patients and providers to both the PHR and the electronic health records (EHRs), achieves the full potential for patients in managing their own health care http://alignmap.com/wp-content/Graphics/med-list-comp2.jpg ¡

PURPOSE OF THIS STUDY to establish an overview of the evolution of PHRs and their role for self-management, based on review of abstracts and full-text review of reviews

CONTENT 1. INTRODUCTION i. Self-management ii. PHR 2. METHOD 3. RESULTS 4. SUMMING UP

METHOD • Review publications were used as a template to identify relevant MeSH terms and search words • Searched MEDLINE through the Ovid interface, no limitation Medical ¡subject ¡headings ¡(MeSH) ¡and ¡Text ¡Words ¡(TW) Search- string 1 ¡ PHR, EPHR, personal health record, personal electronic health record, personally controlled health record, patient shared/held/ carried record, patient accessible record, personal medical record, Health Records Personal/. 2 ¡ Self-management, self-care, Self Care/ ¡ 1 AND 2 ¡

METHOD • Inclusion criteria: – publications focusing on PHR systems relevant for patient self-management. • Reviewed and rated independently all abstracts as “relevant” or “not relevant”. • If disagreement (in the perceived eligibility of the publication or in categorising it) the two reviewers discussed the abstracts to reach consensus. • All identified reviews were read in full text by the first author, and explored to investigate the evolution of PHRs and their role for self- management using content analysis

CONTENT 1. INTRODUCTION i. Self-management ii. PHR 2. METHOD 3. RESULTS 4. SUMMING UP

RESULTS • 62 unique references • 56 met the inclusion and exclusion criteria (3 references did not deal with PHRs. 3 were excluded due to lack of abstract) • The two authors agreed 100 % with regard to inclusion and exclusion. • For categorization of the included references, consensus discussion was necessary for 15 references.

RESULTS ¡ • 56 PHR + Self-Management references • The number of included papers increased heavily over the past ¡ two decades . ¡ ¡ 45 ¡ 40 ¡ 40 ¡ 35 ¡ 30 ¡ 25 ¡ 20 ¡ 12 ¡ 15 ¡ 10 ¡ 2 ¡ 5 ¡ 1 ¡ 1 ¡ 0 ¡ 1990-­‑1994 ¡ 1995-­‑1999 ¡ 2000-­‑2004 ¡ 2005-­‑2009 ¡ 2010-­‑2013 ¡

RESULTS ¡ 56 included papers: 41 (73 %) – USA 15 papers – 9 other countries Paper-based PHRs: 3 Electronic PHRs: 53

RESULTS ¡ The studies maturity level: www.clipartbest.com ¡ • 14 concept descriptions • 6 system descriptions • 3 study designs ¡ ………………………………… • 12 pilots ………………………………… • 11 evaluations of use/ implemented PHRs • 4 RCTs • 6 reviews www.clipartbest.com ¡

RESULTS ¡ Pas-provider Shared Both (4) comm with access (11) messaging (9) 14 concepts 1 1 6 system descr. 1 3 study design 12 pilots 6 4 3 11 evaluation use 1 3 1 4 RCT’s 1 2 6 reviews Shared access : 3 - providers access to the PHR, 4 - patient access to the medical record (EHR) or parts of the medical record, like lab results, 3 - both patient and provider had access to both record types . ¡

RESULTS: Reviews Of 6 reviews: 3 of the reviews presented studies where the PHR system supported self-management: Studies in Archer et al 2011 referred to positive effects due to: - patient access to lab-results, - patient-provider communication, - providers’ update through PHR, - patient understanding, - communication for prescribing medication Benhamou 2011 : 8 studies with positive effects for type 2 diabetic patients: patients felt: - safer - that non-acute problems were taken care of - easier to take care of themselves Tenford et al 2011 found 3 RCT studies of adults with type 2 diabetes: - document small improvements in some but not all diabetes care measures

RESULTS: Reviews ¡ • Sparse evidence to document the value of PHR for self- management • Most PHRs are not based on patients’ needs, - do not support self-management To be adopted/useful for self-management: • PHRs need to be integrated with physicians’ EHR systems, and provide – shared access both ways – secure e-mail communication – educational modules RCTs and other trials of PHR effectiveness and sustainability for patient self-management are needed

SUMMING UP ¡ Self-management in the context of PHRs is a new and immature field: 56 studies: - 40 published 2010-2013 - 62.5 % concept, system, pilot or study design descriptions - 37.5 % were evaluation of use, RCTs, or reviews • PHR - potential to be a tool of great value to realize self- management and patient empowerment. • More studies on health effects and suitability are necessary

¡ Thank you! monika.johansen@telemed.no www.telemed.no Photo: Grytøy in Troms, North of Norway Photos by Oddvar Hagen