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DOI: 10.1055/s-0038-1638838
A Review of the Empirical Evidence of the Healthcare Benefits of Personal Health Records
Correpsondence to:
Publication History
Publication Date:
05 March 2018 (online)
Summary
Objectives: This literature review sought to identify the established evidence of the health and healthcare benefits (or harms) from the use of electronic personal health records (PHRs) and PHR systems.
Methods: The definition of a PHR published in ISO 14292 was used to scope this review and the search strategy. Publications were included if the introduction of a PHR was the primary intervention, and if its evaluation met one of the Cochrane EPOC Group criteria. Studies were excluded if they only reported the design or basic user acceptance of a PHR system without an assessment of its impact on individuals and/or their health care. The impacts were classified according to the six aims of 21st-century health care defined by the US Institute of Medicine.
Results: Searches were conducted in PubMed in December 2012. Out of 741 papers that met our initial search criteria, 31 were retained after title and abstract screening. After full paper review 5 studies were found to report original evidence of impact. Of these, three reported beneficial impacts on effectiveness, one on patient centredness, and one study reported impact on both aims. No harmful effects were reported.
Conclusions: Although this literature review did identify some evidenced benefits from the use of PHRs and systems, our main observation is that there are very few studies published that seek to formally evaluate impact. The majority of publications we screened documented designs or basic user acceptance. Further investment in evaluation is needed to inform the evolution of this field.
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Keywords
Personal health records - evaluation research - review - evidence-based health care - empirical research
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References
- 1 https://healthy.kaiserpermanente.org/health/care/consumer/my-health-manager (accessed January 2013).
- 2 https://www.myhealth.va.gov/index.html (accessed January 2013).
- 3 The European Commission. Strategic implementation plan for the European Innovation Partnership on active and healthy ageing. November 2011, Brussels Available from: http://ec.europa.eu/research/innovation-union/pdf/active-healthy-ageing/steering-group/implementation_plan.pdf (accessed January 2013).
- 4 Please see http://www.nhs.uk/NHSEngland/About-NHSservices/doctors/Pages/expert-patients-programme.aspx (accessed January 2013).
- 5 U.S. Personal Health Records Market 2010 to 2015. Frost & Sullivan Research. Summarised at http://www.frost.com/prod/servlet/report-brochure.pag?id=N98D-01-00-00-00 (accessed January 2013).
- 6 Connecting for Health. Connecting Americans to their healthcare. Final report ofthe working group on policies for electronic information sharing between doctors and patients. New York: Markle Foundation; 2004. http://www.markle.org/health/ publications-briefs-health/1250-connecting-americans-their-health-care (accessed January 2013).
- 7 Tang P, Ash J, Bates D, Overhage M, Sands D. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc 2006; 13: 121-6.
- 8 Pagliari C, Detmer D, Singleton P. Potential of electronic personal health records. BMJ 2007; 335: 330-3.
- 9 International Organization for Standardization. ISO TR 14292. Personal Health Records — Definition, Scope and Context. Geneva: 2011
- 10 International Organization for Standardization. ISO 18308. Requirements for an Electronic Health Record Architecture. Geneva: 2010
- 11 Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. WHO. Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference. New York: 19-22 June 1946, and entered into force on 7 April 1948. Available from: http://www.who.int/governance/eb/who_constitution_en.pdf
- 12 Long T-Y. Toward patient-centered, personalised and personal decision support and knowledge management: a survey. Yearb Med Inform 2012; 104-12.
- 13 Please see: http://cordis.europa.eu/fp7/ict/programme/challenge5_en.html (accessed December 2012).
- 14 Rigby M. Personal health, person centred health and personalised medicine — concepts, consumers, confusion and challenges in the informatics world. Yearb Med Inform 2012; 7-15.
- 15 Kalra D, Fernando B, Morrison Z, Sheikh A. A review of the empirical evidence of the value of structuring and coding of clinical information within electronic health records for direct patient care. [In press].
- 16 Kim J, Jung H, Bates D. History and Trends of “Personal Health Record” Research in PubMed. Healthc Inform Res 2011; March 17 (1) 3-17.
- 17 Cochrane Effective Practice and Organisation of Care Group. Please see http://epoc.cochrane.org/
- 18 Institute of Medicine. Crossing the quality chasm: A new health systems for the 21st Century. National Academy Press; 2001
- 19 Nagykaldi Z, Aspy C, Chou A, Mold J. Impact of a wellness portal on the delivery of patient-centered preventive care. J Am Board Fam Med 2012; 25: 158-67.
- 20 Wagner PJ, Dias J, Howard S, Kintziger KW, Hudson MF, Seol YH. et al. Personal health records and hypertension control: a randomized trial. J Am Med Inform Assoc 2012; 19: 626-34.
- 21 Lau A, Sintchenko V, Crimmins J, Magrabi F, Gallego B, Coiera E. Impact of a web-based personally controlled health management system on influenza vaccination and health services utilization rates: a randomized controlled trial. J Am Med Inform Assoc 2012; 19: 719-27.
- 22 Grant RW, Wald JS, Schnipper JL, Gandhi TK, Poon EG, Orav EJ. et al. Practice-linked online personal health records for type 2 diabetes mellitus. Arch Intern Med 2008; 168 (16) 1776-82.
- 23 Kim E, Mayani A, Modi S, Kim Y, Soh C. Evaluation of a patient-centered electronic health record to overcome the digital divide. Conf Proc IEEE Eng Med Biol Soc 2005; 1: 593-6.
- 24 Gysels M, Richardson A, Higginson I. Does the patient-held record improve continuity and related outcomes in cancer care: a systematic review. Health Expect 2006; 10: 75-91.
- 25 Archer N, Fevrier-Thomas U, Lokker C, McKibbon K, Straus S. Personal health records: a scoping review. J Am Med Inform Assoc 2011; 18: 515-22.
- 26 Schnipper JL, Gandhi TK, Wald JS, Grant RW, Poon EG, Volk LA. et al. Effects of an online personal health record on medication accuracy and safety: a cluster-randomised trial. J Am Med Inform Assoc 2012; 19 (5) 728-34.
- 27 Turvey CL, Zulman DM, Nazi KM, Wakefield BJ, Woods SS, Hogan TP. et al. Transfer of Information from Personal Health Records: A Survey of Veterans Using My HealtheVet. Telemed J E Health 2012; Mar 18 (2) 109-14.
- 28 Tenforde M, Nowacki A, Jain A, Hickner J. The Association Between Personal Health Record Use and Diabetes Quality Measures. J Gen Intern Med 2011; 27 (4) 420-4.
- 29 Krogsboll L, Juhl K, Larsen C, Gotzsche P. General health checks in adults for reducing morbidity and mortality from disease: Cochrane systematic review and meta-analysis. BMJ 2012; 345: e7191.
- 30 Friedman CP, Wyatt J. Evaluation Methods in Biomedical Informatics (Health Informatics). Springer; 2010
- 31 Greenhalgh T, Hinder S, Stramer K, Bratan T, Russell J. Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace. BMJ 2010; 341: c5814.
Correpsondence to:
-
References
- 1 https://healthy.kaiserpermanente.org/health/care/consumer/my-health-manager (accessed January 2013).
- 2 https://www.myhealth.va.gov/index.html (accessed January 2013).
- 3 The European Commission. Strategic implementation plan for the European Innovation Partnership on active and healthy ageing. November 2011, Brussels Available from: http://ec.europa.eu/research/innovation-union/pdf/active-healthy-ageing/steering-group/implementation_plan.pdf (accessed January 2013).
- 4 Please see http://www.nhs.uk/NHSEngland/About-NHSservices/doctors/Pages/expert-patients-programme.aspx (accessed January 2013).
- 5 U.S. Personal Health Records Market 2010 to 2015. Frost & Sullivan Research. Summarised at http://www.frost.com/prod/servlet/report-brochure.pag?id=N98D-01-00-00-00 (accessed January 2013).
- 6 Connecting for Health. Connecting Americans to their healthcare. Final report ofthe working group on policies for electronic information sharing between doctors and patients. New York: Markle Foundation; 2004. http://www.markle.org/health/ publications-briefs-health/1250-connecting-americans-their-health-care (accessed January 2013).
- 7 Tang P, Ash J, Bates D, Overhage M, Sands D. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc 2006; 13: 121-6.
- 8 Pagliari C, Detmer D, Singleton P. Potential of electronic personal health records. BMJ 2007; 335: 330-3.
- 9 International Organization for Standardization. ISO TR 14292. Personal Health Records — Definition, Scope and Context. Geneva: 2011
- 10 International Organization for Standardization. ISO 18308. Requirements for an Electronic Health Record Architecture. Geneva: 2010
- 11 Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. WHO. Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference. New York: 19-22 June 1946, and entered into force on 7 April 1948. Available from: http://www.who.int/governance/eb/who_constitution_en.pdf
- 12 Long T-Y. Toward patient-centered, personalised and personal decision support and knowledge management: a survey. Yearb Med Inform 2012; 104-12.
- 13 Please see: http://cordis.europa.eu/fp7/ict/programme/challenge5_en.html (accessed December 2012).
- 14 Rigby M. Personal health, person centred health and personalised medicine — concepts, consumers, confusion and challenges in the informatics world. Yearb Med Inform 2012; 7-15.
- 15 Kalra D, Fernando B, Morrison Z, Sheikh A. A review of the empirical evidence of the value of structuring and coding of clinical information within electronic health records for direct patient care. [In press].
- 16 Kim J, Jung H, Bates D. History and Trends of “Personal Health Record” Research in PubMed. Healthc Inform Res 2011; March 17 (1) 3-17.
- 17 Cochrane Effective Practice and Organisation of Care Group. Please see http://epoc.cochrane.org/
- 18 Institute of Medicine. Crossing the quality chasm: A new health systems for the 21st Century. National Academy Press; 2001
- 19 Nagykaldi Z, Aspy C, Chou A, Mold J. Impact of a wellness portal on the delivery of patient-centered preventive care. J Am Board Fam Med 2012; 25: 158-67.
- 20 Wagner PJ, Dias J, Howard S, Kintziger KW, Hudson MF, Seol YH. et al. Personal health records and hypertension control: a randomized trial. J Am Med Inform Assoc 2012; 19: 626-34.
- 21 Lau A, Sintchenko V, Crimmins J, Magrabi F, Gallego B, Coiera E. Impact of a web-based personally controlled health management system on influenza vaccination and health services utilization rates: a randomized controlled trial. J Am Med Inform Assoc 2012; 19: 719-27.
- 22 Grant RW, Wald JS, Schnipper JL, Gandhi TK, Poon EG, Orav EJ. et al. Practice-linked online personal health records for type 2 diabetes mellitus. Arch Intern Med 2008; 168 (16) 1776-82.
- 23 Kim E, Mayani A, Modi S, Kim Y, Soh C. Evaluation of a patient-centered electronic health record to overcome the digital divide. Conf Proc IEEE Eng Med Biol Soc 2005; 1: 593-6.
- 24 Gysels M, Richardson A, Higginson I. Does the patient-held record improve continuity and related outcomes in cancer care: a systematic review. Health Expect 2006; 10: 75-91.
- 25 Archer N, Fevrier-Thomas U, Lokker C, McKibbon K, Straus S. Personal health records: a scoping review. J Am Med Inform Assoc 2011; 18: 515-22.
- 26 Schnipper JL, Gandhi TK, Wald JS, Grant RW, Poon EG, Volk LA. et al. Effects of an online personal health record on medication accuracy and safety: a cluster-randomised trial. J Am Med Inform Assoc 2012; 19 (5) 728-34.
- 27 Turvey CL, Zulman DM, Nazi KM, Wakefield BJ, Woods SS, Hogan TP. et al. Transfer of Information from Personal Health Records: A Survey of Veterans Using My HealtheVet. Telemed J E Health 2012; Mar 18 (2) 109-14.
- 28 Tenforde M, Nowacki A, Jain A, Hickner J. The Association Between Personal Health Record Use and Diabetes Quality Measures. J Gen Intern Med 2011; 27 (4) 420-4.
- 29 Krogsboll L, Juhl K, Larsen C, Gotzsche P. General health checks in adults for reducing morbidity and mortality from disease: Cochrane systematic review and meta-analysis. BMJ 2012; 345: e7191.
- 30 Friedman CP, Wyatt J. Evaluation Methods in Biomedical Informatics (Health Informatics). Springer; 2010
- 31 Greenhalgh T, Hinder S, Stramer K, Bratan T, Russell J. Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace. BMJ 2010; 341: c5814.