Young adults on the perceived benefits and expected use of personal health records: a qualitative descriptive study

Quynh Nguyen, Gillian Bartlett, Charo Rodriguez, Pierre-Paul Tellier


Background: Personal health records (PHRs) are tools that allow individuals to access, share and manage their health information online. Despite apparent interest, adoption rates remain low. There is a gap in our understanding as to what different populations of users, in particular young adults, might want from such a tool.

Objective: To describe and interpret the views and expectations of young healthy adults about using an online PHR.

Methods: A qualitative descriptive study was carried out. Four focus groups were conducted with a total of 29 participants (18–34 years old) from a community setting in Montreal, Canada. Interviews were transcribed and analyzed with inductive
thematic analysis.

Results: With respect to how young adults viewed PHRs, three broad themes were identified: perceived advantages to using a PHR, future PHR users and concerns about PHRs. Three other overarching themes emerged from data analysis in terms of what participants expected from using a PHR: the use of the PHR for preventative health, PHR support to take more control over their health and strategies to make the PHR worthwhile. A conceptual framework of factors influencing expectations of PHR use in this population is proposed.

Conclusions: While young adults view the PHR as beneficial, this is not enough for them to be motivated to actually use a PHR. To foster use, the PHRs need to be perceived as a health prevention tool that helps users to increase control over their
health status. More research is needed to understand the expectations and anticipated use of different populations in designing a person-centered tool;the proposed
framework provides theoretical basis in this regard.


personal health records, health information technology, primary prevention, primary care, qualitative research

Full Text:



Neupert P. White Paper: Investing in health IT: a stimulus for a healthier Canada. Healthc Q. 2009;12 Spec No Ontario:91-5.

Canada CHIaHCo, editor Beyond good intentions: Accelerating the electronic health record in Canada. In Policy Conference; 2006; Montebello.

Tang PC, Lansky D. The missing link: bridging the patient-provider health information gap. Health Aff (Millwood). 2005;24(5):1290-5.

Pagliari C, Detmer D, Singleton P. Potential of electronic personal health records. BMJ. 2007;335(7615):330-3.

Peregrin T. Personal and electronic health records: sharing nutrition information across the health care community. J Am Diet Assoc. 2009;109(12):1988-91.

Transforming healthcare: IOM panel discusses vision and reality after Crossing the Quality Chasm. Qual Lett Healthc Lead. 2004;16(3):9-12, 1.

Reti SR, Feldman HJ, Ross SE, Safran C. Improving personal health records for patient-centered care. Journal of the American Medical Informatics Association. 2010;17(2):192-5.

Foundation TM. The Personal Health Working Group Final Report 2003.

Shaller D. Patient-centered care: What does it take. 2007.

Raisinghani MS, Young E. Personal health records: key adoption issues and implications for management. Int J Electron Healthc. 2008;4(1):67-77.

Belanger E, Bartlett G, Dawes M, Rodriguez C, Hasson-Gidoni I. Examining the evidence of the impact of health information technology in primary care: an argument for participatory research with health professionals and patients. Int J Med Inform. 2012;81(10):654-61.

Kaelber D, Shah S, Vincent A. The value of personal health records. 2008.

Archer N, Fevrier-Thomas U, Lokker C, McKibbon KA, Straus SE. Personal health records: a scoping review. J Am Med Inform Assoc. 2011;18(4):515-22.

Hung M, Conrad J, Hon SD, Cheng C, Franklin JD, Tang P. Uncovering patterns of technology use in consumer health informatics. Wiley interdisciplinary reviews Computational statistics. 2013;5(6):432-47.

Logue MD, Effken JA. Modeling factors that influence personal health records adoption. Computers, informatics, nursing : CIN. 2012;30(7):354-62.

Winkelman WJ, Leonard KJ, Rossos PG. Patient-perceived usefulness of online electronic medical records: employing grounded theory in the development of information and communication technologies for use by patients living with chronic illness. J Am Med Inform Assoc. 2005;12(3):306-14.

Fuji KT, Abbott AA, Galt KA. Personal health record design: qualitative exploration of issues inhibiting optimal use. Diabetes Care. 2014;37(1):e13-4.

Gustafson DH, Wyatt JC. Evaluation of ehealth systems and services - We need to move beyond hits and testimonials. British Medical Journal. 2004;328(7449):1150-.

Park T, Chira P, Miller K, Nugent L. Living Profiles: an example of user-centered design in developing a teen-oriented personal health record. Personal Ubiquitous Comput. 2015;19(1):69-77.

Denton IC. Will patients use electronic personal health records? Responses from a real-life experience. J Healthc Inf Manag. 2001;15(3):251-9.

Keselman A, Slaughter L, Smith CA, Kim H, Divita G, Browne A, et al. Towards consumer-friendly PHRs: patients' experience with reviewing their health records. AMIA Annu Symp Proc. 2007:399-403.

Lober WB, Zierler B, Herbaugh A, Shinstrom SE, Stolyar A, Kim EH, et al. Barriers to the use of a personal health record by an elderly population. AMIA Annu Symp Proc. 2006:514-8.

Nazi KM, Woods SS. MyHealtheVet PHR: a description of users and patient portal use. AMIA Annu Symp Proc. 2008:1182.

Kim E, Mayani A, Modi S, Soh CB, Kim Y. Evaluation of patient-centered electronic health record to overcome digital divide. 2005 27th Annual International Conference of the IEEE Engineering in Medicine and Biology Society, Vols 1-7. 2005:593-6

Schnipper JL, Gandhi TK, Wald JS, Grant RW, Poon EG, Volk LA, et al. Design and implementation of a web-based patient portal linked to an electronic health record designed to improve medication safety: the Patient Gateway medications module. Inform Prim Care. 2008;16(2):147-55.

Tobacman JK, Kissinger P, Wells M, Prokuski J, Hoyer M, McPherson P, et al. Implementation of personal health records by case managers in a VAMC general medicine clinic. Patient Educ Couns. 2004;54(1):27-33.

Chaudhry B, Wang J, Wu S, Maglione M, Mojica W, Roth E, et al. Systematic review: impact of health information technology on quality, efficiency, and costs of medical care. Ann Intern Med. 2006;144(10):742-52.

Glazier RHea. The impact of not having a primary care physician among people with chronic conditions. Toronto: July 2008.

Foundation HaS. A perfect storm of heart disease looming on our horizon. Heart and Stroke Foundation's 2010 Annual Report on Canadians' Health. January 2010.

Hsia Y, Neubert AC, Rani F, Viner RM, Hindmarsh PC, Wong IC. An increase in the prevalence of type 1 and 2 diabetes in children and adolescents: results from prescription data from a UK general practice database. Br J Clin Pharmacol. 2009;67(2):242-9.

Canada PHAo. The Chief Public Health Officer's Report on the State of Public Health in Canada, 2011. Youth and Young Adults — Life in Transition. 2011.

Association. TCoFPoCatCM. The Wait Stops Here. The Primary Care Wait Time Partnership: Final Report. December 2009.

Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334-40.

Coreil J. Group interview methods in community health research. Med Anthropol. 1995;16(3):193-210.

Krueger RA, Casey M. Focus group: A practical guide for applied research. 3rd edition ed. Thousand Oaks: Sage Publications; 2000.

Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3:77-101.

Boyatzis RE. Transforming qualitative information: Thematic analysis and code development. Thousand Oaks: Sage Publications; 1998.

Weingart SN, Rind D, Tofias Z, Sands DZ. Who uses the patient internet portal? The PatientSite experience. J Am Med Inform Assoc. 2006;13(1):91-5.

Burkhard RJ, Schooley B, Dawson J, Horan TA. Information systems and healthcare XXXVII: When your employer provides your personal health record - Exploring employee perceptions of an employer-sponsored PHR system. Communications of the Association for Information Systems. 2010;27(19):16.

Earnest MA, Ross SE, Wittevrongel L, Moore LA, Lin CT, Earnest MA, et al. Use of a patient-accessible electronic medical record in a practice for congestive heart failure: patient and physician experiences. Journal of the American Medical Informatics Association. 2004;11(5):410-7.

Hoerbst A, Kohl CD, Knaup P, Ammenwerth E. Attitudes and behaviors related to the introduction of electronic health records among Austrian and German citizens. International Journal of Medical Informatics. 2010;79(2):81-9.

Lafky DB, Horan TA. Health Status and Prospective PHR Use. AMIA Annu Symp Proc. 2008:1016.

Pyper C, Amery J, Watson M, Crook C. Patients' experiences when accessing their on-line electronic patient records in primary care. British Journal of General Practice. 2004;54(498):38-43.

Walker J, Ahern DK, Le LX, Delbanco T. Insights for Internists: "I Want the Computer to Know Who I Am". Journal of General Internal Medicine. 2009;24(6):727-32.

Weitzman ER, Kaci L, Mandl KD. Acceptability of a Personally Controlled Health Record in a Community-Based Setting: Implications for Policy and Design. Journal of Medical Internet Research. 2009;11(2):-.

Britto MT, Jimison HB, Munafo JK, Wissman J, Rogers ML, Hersh W. Usability testing finds problems for novice users of pediatric portals. J Am Med Inform Assoc. 2009;16(5):660-9.

Marchioni G, Rimer BK, Wildemuth B. Evidence base for personal health record usability: Final report to the National Cancer Institute. 2007.

Or CK, Karsh BT. A systematic review of patient acceptance of consumer health information technology. J Am Med Inform Assoc. 2009;16(4):550-60.

Krist AH, Peele E, Woolf SH, Rothemich SF, Loomis JF, Longo DR, et al. Designing a patient-centered personal health record to promote preventive care. BMC Med Inform Decis Mak. 2011;11:73.

Krist AH, Woolf SH, Rothemich SF, Johnson RE, Peele JE, Cunningham TD, et al. Interactive preventive health record to enhance delivery of recommended care: a randomized trial. Ann Fam Med. 2012;10(4):312-9.

Kittler AF, Carlson GL, Harris C, Lippincott M, Pizziferri L, Volk LA, et al. Primary care physician attitudes towards using a secure web-based portal designed to facilitate electronic communication with patients. Inform Prim Care. 2004;12(3):129-38.

Witry MJ, Doucette WR, Daly JM. Family physician perceptions of personal health records. Perspectives in Health Information Management. Winter 2010:11.



  • There are currently no refbacks.

This is an open access journal, which means that all content is freely available without charge to the user or their institution. Users are allowed to read, download, copy, distribute, print, search, or link to the full texts of the articles in this journal starting from Volume 21 without asking prior permission from the publisher or the author. This is in accordance with the BOAI definition of open accessFor permission regarding papers published in previous volumes, please contact us.

Privacy statement: The names and email addresses entered in this journal site will be used exclusively for the stated purposes of this journal and will not be made available for any other purpose or to any other party.

Online ISSN 2058-4563 - Print ISSN 2058-4555. Published by BCS, The Chartered Institute for IT