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The patients’ active role in managing a personal electronic health record: a qualitative analysis

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Abstract

Purpose

The complexity of illness and cross-sectoral health care pose challenges for patients with colorectal cancer and their families. Within a patient-centered care paradigm, it is vital to give patients the opportunity to play an active role. Prospective users’ attitudes regarding the patients’ role in the context of a patient-controlled electronic health record (PEPA) were explored.

Methods

A qualitative study across regional health care settings and health professions was conducted. Overall, 10 focus groups were performed collecting views of 3 user groups: patients with colorectal cancer (n = 12) and representatives from patient support groups (n = 2), physicians (n = 17), and other health care professionals (HCPs) (n = 16). Data were audio- and videotaped, transcribed verbatim and thematically analyzed using qualitative content analysis.

Results

The patients’ responsibility as a gatekeeper and access manager was at the center of the focus group discussions, although HCPs addressed aspects that would limit patients taking an active role (e.g., illness related issues). Despite expressed concerns, PEPAs possibility to enhance personal responsibility was seen in all user groups.

Conclusions

Giving patients an active role in managing a personal electronic health record is an innovative patient-centered approach, although existing restraints have to be recognized. To enhance user adoption and advance PEPAs potential, key user needs have to be addressed.

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References

  1. Hewitt ME, Ganz P (2006) From cancer patient to cancer survivor. Lost in transition. National Academies Press, Washington, D.C

    Google Scholar 

  2. Parry C, Kent EE, Forsythe LP et al (2013) Can’t see the forest for the care plan: a call to revisit the context of care planning. J Clin Oncol 31(21):2651–2653. doi:10.1200/JCO.2012.48.4618

    Article  PubMed Central  PubMed  Google Scholar 

  3. McCorkle R, Ercolano E, Lazenby M et al (2011) Self-management: enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin 61(1):50–62. doi:10.3322/caac.20093

    Article  PubMed Central  PubMed  Google Scholar 

  4. Levit LA, Balogh E, Nass SJ et al (2013) Delivering high-quality cancer care. Charting a new course for a system in crisis. The National Academies Press, Washington, D.C

    Google Scholar 

  5. Ludt S, Urban E, Eckardt J et al (2013) Evaluating the quality of colorectal cancer care across the interface of healthcare sectors. PLoS One 8(5):e60947. doi:10.1371/journal.pone.0060947

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  6. Tishelman C, Bernhardson B, Blomberg K et al (2004) Complexity in caring for patients with advanced cancer. J Adv Nurs 45(4):420–429. doi:10.1046/j.1365-2648.2003.02925.x

    Article  PubMed  Google Scholar 

  7. Koroukian SM, Xu F, Beaird H et al (2007) Complexity of care needs and unstaged cancer in elders: a population-based study. Cancer Detect Prev 31(3):199–206. doi:10.1016/j.cdp.2007.04.002

    Article  PubMed Central  PubMed  Google Scholar 

  8. Wagner EH, Bowles A, Erin J, Greene SM et al (2010) The quality of cancer patient experience: perspectives of patients, family members, providers and experts. Qual Saf Health Care 19(6):484–489. doi:10.1136/qshc.2010.042374

    PubMed  Google Scholar 

  9. Gerteis M, Edgman-Levitan S, Deleay J et al (1993) Introduction: medicine and health from the patient’s perspective. In: Gerteis M, Edgman-Levitan S, Daley J et al (eds) Through the patient’s eyes: understanding and promoting patient-centered care. Jossey-Bass, San Francisco, pp 1–5

    Google Scholar 

  10. Epstein RM, Street RL (2011) The values and value of patient-centered care. Ann Fam Med 9(2):100–103. doi:10.1370/afm.1239

    Article  PubMed Central  PubMed  Google Scholar 

  11. Aujoulat I, d’Hoore W, Deccache A (2007) Patient empowerment in theory and practice: polysemy or cacophony? Patient Educ Couns 66(1):13–20. doi:10.1016/j.pec.2006.09.008

    Article  PubMed  Google Scholar 

  12. Lorig KR, Ritter P, Stewart AL et al (2001) Chronic disease self-management program: 2-year health status and health care utilization outcomes. Med Care 39(11):1217–1223. doi:10.1097/00005650-200111000-00008

    Article  CAS  PubMed  Google Scholar 

  13. Steed L, Cooke D, Newman S (2003) A systematic review of psychosocial outcomes following education, self-management and psychological interventions in diabetes mellitus. Patient Educ Couns 51(1):5–15. doi:10.1016/S0738-3991(02)00213-6

    Article  PubMed  Google Scholar 

  14. Anderson RM, Funnell MM (2005) Patient empowerment: reflections on the challenge of fostering the adoption of a new paradigm. Patient Educ Couns 57(2):153–157. doi:10.1016/j.pec.2004.05.008

    Article  PubMed  Google Scholar 

  15. Emanuel EJ, Emanuel LL (1992) Four models of the physician-patient relationship. JAMA 267(16):2221–2226. doi:10.1001/jama.267.16.2221

    Article  CAS  PubMed  Google Scholar 

  16. Taylor K (2009) Paternalism, participation and partnership—the evolution of patient centeredness in the consultation. Patient Educ Couns 74(2):150–155. doi:10.1016/j.pec.2008.08.017

    Article  PubMed  Google Scholar 

  17. Street RL (2003) Mediated consumer-provider communication in cancer care: the empowering potential of new technologies. Patient Educ Couns 50(1):99–104. doi:10.1016/S0738-3991(03)00089-2

    Article  PubMed  Google Scholar 

  18. Fisher B, Bhavnani V, Winfield M (2009) How patients use access to their full health records: a qualitative study of patients in general practice. J R Soc Med 102(12):539–544. doi:10.1258/jrsm.2009.090328

    Article  PubMed Central  PubMed  Google Scholar 

  19. Weppner WG, Ralston JD, Koepsell TD et al (2010) Use of a shared medical record with secure messaging by older patients with diabetes. Diabetes Care 33(11):2314–2319. doi:10.2337/dc10-1124

    Article  PubMed Central  PubMed  Google Scholar 

  20. Ralston JD, Martin DP, Anderson ML et al (2009) Group health cooperative’s transformation toward patient-centered access. Med Care Res Rev 66(6):703–724. doi:10.1177/1077558709338486

    Article  PubMed  Google Scholar 

  21. Tenforde M, Jain A, Hickner J (2011) The value of personal health records for chronic disease management: what do we know? Fam Med 43(5):351–354

    PubMed  Google Scholar 

  22. Goldzweig CL, Orshansky G, Paige NM et al (2013) Electronic patient portals: evidence on health outcomes, satisfaction, efficiency, and attitudes: a systematic review. Ann Intern Med 159(10):677–687. doi:10.7326/0003-4819-159-10-201311190-00006

    Article  PubMed  Google Scholar 

  23. Wiljer D, Leonard KJ, Urowitz S et al (2010) The anxious wait: assessing the impact of patient accessible EHRs for breast cancer patients. BMC Med Inform Decis Mak 10(1):46. doi:10.1186/1472-6947-10-46

    Article  PubMed Central  PubMed  Google Scholar 

  24. Kuijpers W, Groen WG, Aaronson NK et al (2013) A systematic review of web-based interventions for patient empowerment and physical activity in chronic diseases: relevance for cancer survivors. J Med Internet Res 15(2):e37. doi:10.2196/jmir.2281

    Article  PubMed Central  PubMed  Google Scholar 

  25. Kitzinger J (1995) Qualitative research. Introducing focus groups. BMJ 311(7000):299–302. doi:10.1136/bmj.311.7000.299

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  26. Gläser J, Laudel G (2006) Experteninterviews und qualitative Inhaltsanalyse. VS Verlag für Sozialwissenschaften, Wiesbaden

  27. Mayring P (2010) Qualitative Inhaltsanalyse. Grundlagen und Techniken. Beltz, Weinheim

  28. Walker J, Leveille SG, Ngo L et al (2011) Inviting patients to read their doctors’ notes: patients and doctors look ahead: patient and physician surveys. Ann Intern Med 155(12):811–819. doi:10.7326/0003-4819-155-12-201112200-00003

    Article  PubMed Central  PubMed  Google Scholar 

  29. Delbanco T, Walker J, Bell SK et al (2012) Inviting patients to read their doctors’ notes: a quasi-experimental study and a look ahead. Ann Intern Med 157(7):461–470. doi:10.7326/0003-4819-157-7-201210020-00002

    Article  PubMed Central  PubMed  Google Scholar 

  30. Wynia MK, Torres GW, Lemieux J (2011) Many physicians are willing to use patients’ electronic personal health records, but doctors differ by location, gender, and practice. Health Aff (Millwood) 30(2):266–273. doi:10.1377/hlthaff.2010.0342

    Article  Google Scholar 

  31. Ross SE, Todd J, Moore LA et al (2005) Expectations of patients and physicians regarding patient-accessible medical records. J Med Internet Res 7(2):e13. doi:10.2196/jmir.7.2.e13

    Article  PubMed Central  PubMed  Google Scholar 

  32. Zulman DM, Nazi KM, Turvey CL et al (2011) Patient interest in sharing personal health record information: a web-based survey. Ann Intern Med 155(12):805–810. doi:10.7326/0003-4819-155-12-201112200-00002

    Article  PubMed  Google Scholar 

  33. Greenhalgh T, Hinder S, Stramer K et al (2010) Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace. BMJ 341(16 1):c5814. doi:10.1136/bmj.c5814

    Article  PubMed Central  PubMed  Google Scholar 

  34. Yamin CK, Emani S, Williams DH et al (2011) The digital divide in adoption and use of a personal health record. Arch Intern Med 171(6):568–574. doi:10.1001/archinternmed.2011.34

    Article  PubMed  Google Scholar 

  35. Bhavnani V, Fisher B, Winfield M et al (2011) How patients use access to their electronic GP record—a quantitative study. Fam Pract 28(2):188–194. doi:10.1093/fampra/cmq092

    Article  PubMed  Google Scholar 

  36. Zickmund SL, Hess R, Bryce CL et al (2008) Interest in the use of computerized patient portals: role of the provider-patient relationship. J Gen Intern Med 23(Suppl 1):20–26. doi:10.1007/s11606-007-0273-6

    Article  PubMed Central  PubMed  Google Scholar 

  37. Tang PC, Ash JS, Bates DW et al (2006) Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc 13(2):121–126. doi:10.1197/jamia.M2025

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  38. Pagliari C, Detmer D, Singleton P (2007) Potential of electronic personal health records. BMJ 335(7615):330–333. doi:10.1136/bmj.39279.482963.AD

    Article  PubMed Central  PubMed  Google Scholar 

  39. Bourgeois FC, Taylor PL, Emans SJ et al (2008) Whose personal control? Creating private, personally controlled health records for pediatric and adolescent patients. J Am Med Inform Assoc 15(6):737–743. doi:10.1197/jamia.M2865

    Article  PubMed Central  PubMed  Google Scholar 

  40. Earnest MA, Ross SE, Wittevrongel L et al (2004) Use of a patient-accessible electronic medical record in a practice for congestive heart failure: patient and physician experiences. J Am Med Inform Assoc 11(5):410–417. doi:10.1197/jamia.M1479

    Article  PubMed Central  PubMed  Google Scholar 

  41. Burke RP, Rossi AF, Wilner BR et al (2010) Transforming patient and family access to medical information: utilisation patterns of a patient-accessible electronic health record. Cardiol Young 20(5):477–484. doi:10.1017/S1047951110000363

    Article  PubMed  Google Scholar 

  42. Ammenwerth E, Schnell-Inderst P, Hoerbst A (2011) Patient empowerment by electronic health records: first results of a systematic review on the benefit of patient portals. Stud Health Technol Inform 165:63–67. doi:10.3233/978-1-60750-735-2-63

    PubMed  Google Scholar 

  43. Tuil WS, Verhaak CM, Braat DDM et al (2007) Empowering patients undergoing in vitro fertilization by providing Internet access to medical data. Fertil Steril 88(2):361–368. doi:10.1016/j.fertnstert.2006.11.197

    Article  PubMed  Google Scholar 

  44. Wagner PJ, Dias J, Howard S et al (2012) Personal health records and hypertension control: a randomized trial. J Am Med Inform Assoc 19(4):626–634. doi:10.1136/amiajnl-2011-000349

    Article  PubMed Central  PubMed  Google Scholar 

  45. Weitzman ER, Kaci L, Mandl KD (2009) Acceptability of a personally controlled health record in a community-based setting: implications for policy and design. J Med Internet Res 11(2):e14. doi:10.2196/jmir.1187

    Article  PubMed Central  PubMed  Google Scholar 

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Acknowledgments

We want to thank all our focus group participants and Sarah Brophy, an English native speaker working at the Department of General Practice and Health Services Research for reviewing this manuscript.

Source of funding

This study is funded by the German Federal Ministry of Education and Research (funding code 01KQ1003B).

Conflict of interest

The authors do declare that no conflict of interest does exist.

Author information

Authors and Affiliations

  1. Department of General Practice and Health Services Research, University Hospital Heidelberg, Voßstrasse 2, 69115, Heidelberg, Germany

    Ines Baudendistel, Martina Kamradt, Sarah Brophy, Gerda Längst, Joachim Szecsenyi & Dominik Ose

  2. National Centre for Tumor Diseases (NCT), Ethics and Patient-Oriented Care, Im Neuenheimer Feld 460, 69120, Heidelberg, Germany

    Eva Winkler & Felicitas Eckrich

  3. Department of Information Technology and Medical Engineering, University Hospital Heidelberg, Speyerer Straße 4, 69115, Heidelberg, Germany

    Oliver Heinze & Bjoern Bergh

Authors
  1. Ines Baudendistel
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  2. Eva Winkler
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  3. Martina Kamradt
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  4. Sarah Brophy
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  5. Gerda Längst
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  7. Oliver Heinze
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  9. Joachim Szecsenyi
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Corresponding author

Correspondence to Ines Baudendistel.

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Baudendistel, I., Winkler, E., Kamradt, M. et al. The patients’ active role in managing a personal electronic health record: a qualitative analysis. Support Care Cancer 23, 2613–2621 (2015). https://doi.org/10.1007/s00520-015-2620-1

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  • DOI: https://doi.org/10.1007/s00520-015-2620-1

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