The Requirements and Challenges in Using Personal Health Record

Document Type : مقاله مروری نقلی

Authors
Mohammad Hosein Hayavi-Haghighi 1
Zari Rahmatpasand-Fatideh 2
Mohammad Dehghani 3
1 Assistant Professor, Health Information Management, Department of Health Information Technology, School of Allied Medical Sciences, Hormozgan University of Medical Sciences, Bandar Abbas, Iran
2 BSc, Medical Record, Iran Psychiatric Hospital, Iran University of Medical Sciences AND MSc Student, Health Services Management, Department of Health Services Management, School of Management and Social Sciences, North Tehran Branch, Islamic Azad University, Tehran, Iran
3 PhD Student, Health Information Management, Student Research Committee, School of Management and Medical Informatics AND Scientific and Educational Center for Health Management of Iran Tabriz University of Medical Sciences, Tabriz, Iran
10.22122/him.v16i4.3922
Abstract
Patients apply the Personal Health Record (PHR) to access and use their record information and other medical resources. This study aimed to explain the concept, requirements, and challenges of PHR. This was a narrative literature review conducted by searching Medline, Embase, CINAHL, and Scientific Information Database (SID) databases. Different studies agreed that PHR should be electronic, and the patient should be able to manage and control it. PHR requirements were technical (interoperability and functionality), legal (data security, privacy, and confidentiality), and social (health literacy and personal responsibility) issues. PHR challenges could be categorized as organizational (change management), data (data custodianship, access, and content of PHR), and legal (liability and policy constraints). Successful implementation of PHR was based on understanding of the care environment, users, and needs. The widespread use of PHR required full cooperation of system designers, care providers, health policymakers, and the public.

Keywords

  1. Dehghani M, Ghoddoosi-Nejad D, Khara R, Mirabootalebi N, Hayavi Haghighi MH. Information and communication technology requirements for Iran's holistic scientific map on health: A qualitative study. Mod Care J 2017; 14(3): e65735.
  2. Mirabootalebi N, Ahmadi M, Dehghani M, Khani S, Azad M. Electronic medical records, a new step in technology of health system: Administrators and physicians` perspective. Payavard Salamat 2017; 10(5): 409-18. [In Persian].
  3. Beard L, Schein R, Morra D, Wilson K, Keelan J. The challenges in making electronic health records accessible to patients. J Am Med Inform Assoc 2012; 19(1): 116-20.
  4. Cabitza F, Simone C, De MG. User-driven prioritization of features for a prospective InterPersonal Health Record: Perceptions from the Italian context. Comput Biol Med 2015; 59: 202-10.
  5. Genitsaridi I, Kondylakis H, Koumakis L, Marias K, Tsiknakis M. Evaluation of personal health record systems through the lenses of EC research projects. Comput Biol Med 2015; 59: 175-85.
  6. Dehghani M, Hayavi Haghighi M H, Tavassoli-Farahi M. A comparison of teaching and non-teaching hospitals emergency centers information management systems of Hormozgan University of Medical Sciences. Journal of Modern Medical Information Sciences 2015; 1(2): 70-9. [In Persian].
  7. Saripalle RK. Fast Health Interoperability Resources (FHIR): Current status in the healthcare system. International Journal of E-Health and Medical Communications 2019; 10(1), 76-93.
  8. Monsen KA, Westra BL, Paitich N, Ekstrom D, Mehle SC, Kaeding M, et al. Developing a personal health record for community-dwelling older adults and clinicians: Technology and content. J Gerontol Nurs 2012; 38(7): 21-5.
  9. Ancker JS, Miller MC, Patel V, Kaushal R. Sociotechnical challenges to developing technologies for patient access to health information exchange data. J Am Med Inform Assoc 2014; 21(4): 664-70.
  10. Britto MT, Wimberg J. Pediatric personal health records: Current trends and key challenges. Pediatrics 2009; 123(Suppl 2): S97-S99.
  11. Grossman JM, Zayas-Caban T, Kemper N. Information gap: Can health insurer personal health records meet patients' and physicians' needs? Health Aff (Millwood) 2009; 28(2): 377-89.
  12. Hayavi Haghighi MH, Dehghani M, Hosseini Teshizi S, Asgari B, Reisi Mo. Attitudes of medical record department staff in hospitals affiliated to Hormozgan University of Medical Sciences about the importance of hospital information system and its implementation prerequisites and selection criteria. Health Inf Manage 2012; 9(4): 471-8. [In Persian].
  13. Dorr D, Bonner LM, Cohen AN, Shoai RS, Perrin R, Chaney E, et al. Informatics systems to promote improved care for chronic illness: A literature review. J Am Med Inform Assoc 2007; 14(2): 156-63.
  14. Pagliari C, Detmer D, Singleton P. Potential of electronic personal health records. BMJ 2007; 335(7615): 330-3.
  15. Yeo Y, Park J, Roh S, Levkoff S. Use of electronic personal health records (PHRs) for complementary and alternative medicine (CAM) disclosure: Implications for integrative health care. Complement Ther Med 2016; 26: 108-16.
  16. Hess R, Fischer GS, Sullivan SM, Dong X, Weimer M, Zeith C, et al. Patterns of response to patient-centered decision support through a personal health record. Telemed J E Health 2014; 20(11): 984-9.
  17. Krist AH, Woolf SH, Bello GA, Sabo RT, Longo DR, Kashiri P, et al. Engaging primary care patients to use a patient-centered personal health record. Ann Fam Med 2014; 12(5): 418-26.
  18. Abukhousa E, Mohamed N, Al-Jaroodi J. e-Health cloud: Opportunities and challenges. Future Internet 2012; 4(4): 621-45.
  19. Price M, Bellwood P, Kitson N, Davies I, Weber J, Lau F. Conditions potentially sensitive to a personal health record (PHR) intervention, a systematic review. BMC Med Inform Decis Mak 2015; 15: 32.
  20. Martinez M, Baum A, Gomez Saldano AM, Gomez A, Luna D, Gonzalez Bernaldo de Quiros F. Predictive variables of the use of personal health record: The Hospital Italiano de Buenos Aires study. Stud Health Technol Inform 2013; 192: 1171.
  21. Practice brief. The role of the personal health record in the EHR. J AHIMA 2005; 76(7): 64A-D.
  22. Endsley S, Kibbe DC, Linares A, Colorafi K. An introduction to personal health records. Fam Pract Manag 2006; 13(5): 57-62.
  23. EHR Connection. NAHIT, ONCHIT announce health information technology definitions [Online]. [cited 2008 Jul 14]; Available from: URL: http://www.hcpro.com/HOM-215033-2939/NAHIT-ONCHIT-announce-health-information-technology-definitions.html
  24. Asadi F, Moghaddasi H, Hosseini A, Dehghani M. Situation analysis of outpatient information management systems in hospitals affiliated with universities of medical sciences, Tehran, Iran. Health Inf Manage 2012; 9(3): 432-9. [In Persian].
  25. Gaskin GL, Longhurst CA, Slayton R, Das AK. Sociotechnical challenges of developing an interoperable personal health record: Lessons learned. Appl Clin Inform 2011; 2(4): 406-19.
  26. Plastiras P, O'Sullivan DM. Combining ontologies and open standards to derive a middle layer information model for interoperability of personal and electronic health records. J Med Syst 2017; 41(12): 195.
  27. Roehrs A, da Costa CA, Righi RDR, Rigo SJ, Wichman MH. Toward a model for personal health record interoperability. IEEE J Biomed Health Inform 2019; 23(2): 867-73.
  28. Samadpour Hame, Sadoughi Fara. Data set of electronic personal health records for Iranian Students of Medical Sciences. Health Inf Manage 2015; 12(4 (44)): 416-25. [In Persian].
  29. Brandt R, Rice R. Building a better PHR paradigm: Lessons from the discontinuation of Google Health™. Health Policy and Technology 2014; 3(3): 200-7.
  30. Kim K, Nahm E. Benefits of and barriers to the use of personal health records (PHR) for health management among adults. Online J Nurs Inform 2012; 16(3): 1-9.
  31. Urbauer P, Sauermann S, Frohner M, Forjan M, Pohn B, Mense A. Applicability of IHE/Continua components for PHR systems: Learning from experiences. Comput Biol Med 2015; 59: 186-93.
  32. Cushman R, Froomkin AM, Cava A, Abril P, Goodman KW. Ethical, legal and social issues for personal health records and applications. J Biomed Inform 2010; 43(5 Suppl): S51-S55.
  33. Van Gorp P, Comuzzi M, Jahnen A, Kaymak U, Middleton B. An open platform for personal health record apps with platform-level privacy protection. Comput Biol Med 2014; 51: 14-23.
  34. Datta A, Dave N, Mitchell J, Nissenbaum H, Sharma D. Privacy challenges in patient-centric health information systems (Position paper). Proceedings of the 1st Usenix Workshop on Health Security and Privacy (HealthSec '10); 2010 Aug 10; Washington, DC, USA.
  35. Liu L, Shih P, Hayes G. Barriers to the adoption and use of personal health record systems. Proceedings of the 2011 iConference; 2011 8-11 Feb; Seattle, WA, USA. P. New York, NY: ACM: 2011. p. 363-70.
  36. Taha J, Czaja SJ, Sharit J, Morrow DG. Factors affecting usage of a personal health record (PHR) to manage health. Psychol Aging 2013; 28(4): 1124-39.
  37. Hemsley B, Rollo M, Georgiou A, Balandin S, Hill S. The health literacy demands of electronic personal health records (e-PHRs): An integrative review to inform future inclusive research. Patient Educ Couns 2018; 101(1): 2-15.
  38. Noblin AM, Wan TT, Fottler M. The impact of health literacy on a patient's decision to adopt a personal health record. Perspect Health Inf Manag 2012; 9: 1-13.
  39. Smith SG, O'Conor R, Aitken W, Curtis LM, Wolf MS, Goel MS. Disparities in registration and use of an online patient portal among older adults: findings from the LitCog cohort. J Am Med Inform Assoc 2015; 22(4): 888-95.
  40. Smith S, Duman M. The state of consumer health information: An overview. Health Info Libr J 2009; 26(4): 260-78.
  41. Cortelyou-Ward K. Using the personal health record to improve health literacy: A Social capital perspective. International Journal of Business, Humanities, and Technology 2012; 2(3): 7-15.
  42. Paton C, Hansen M, Fernandez-Luque L, Lau AY. Self-Tracking, Social Media and Personal Health Records for Patient Empowered Self-Care. Contribution of the IMIA Social Media Working Group. Yearb Med Inform 2012; 7: 16-24.
  43. Park YR, Lee Y, Kim JY, Kim J, Kim HR, Kim YH, et al. Managing patient-generated health data through mobile personal health records: Analysis of usage data. JMIR Mhealth Uhealth 2018; 6(4): e89.
  44. Huba N, Zhang Y. Designing patient-centered personal health records (PHRs): Health care professionals' perspective on patient-generated data. J Med Syst 2012; 36(6): 3893-905.
  45. Ryu B, Kim N, Heo E, Yoo S, Lee K, Hwang H, et al. Impact of an electronic health record-integrated personal health record on patient participation in health care: development and randomized controlled trial of MyHealthKeeper. J Med Internet Res 2017; 19(12): e401.
  46. Vreugdenhil MM, Kool RB, van BK, Assendelft WJ, Kremer JA. Use and effects of patient access to medical records in general practice through a personal health record in the netherlands: Protocol for a mixed-methods study. JMIR Res Protoc 2018; 7(9): e10193.
  47. Vest JR, Gamm LD. Health information exchange: Persistent challenges and new strategies. J Am Med Inform Assoc 2010; 17(3): 288-94.
  48. Carrion Senor I, Fernandez-Aleman JL, Toval A. Are personal health records safe? A review of free web-accessible personal health record privacy policies. J Med Internet Res 2012; 14(4): e114.
  49. Househ MS, Borycki EM, Rohrer WM, Kushniruk AW. Developing a framework for meaningful use of personal health records (PHRs). Health Policy and Technology 2014; 3(4): 272-80.
Health Information Management
Volume 16, Issue 4 - Serial Number 4
Autumn 2019
Pages 203-209