Understanding Patient Requests for Access to Hospital Health Records Globally

By Kay Nicol, BBus, MBA, BSc; Kerryn Butler-Henderson, BSc, MBA, MPH, PhD, FAIDH, CHIA; Joan Carlini, BBus, MMark, PhD; and Kim Lehman, BA, BLitt, PhD

In a patient-centric environment, providing individuals with access to their clinical information enables improved knowledge, increased satisfaction, and greater influence over personal health outcomes.1 Under the provisions of relevant legislation relating to the release of health information, individuals are entitled to access health records created as evidence of care and treatment received.2-11 Requests for the release of information of health records have traditionally been a function of a hospital’s health information management (HIM) department or the administrative staff in primary healthcare.12 The process remains labor intensive, particularly where health records are stored in hybrid systems (paper and electronic).13

Many countries, including the United States, allow direct access through some type of portal—an online system allowing patient (and their caregivers with appropriate authorization) access to specific information contained in the record, including the ability to view, amend, or delete information.14-16 Successful implementation of digital health interventions globally has resulted in improved communication between clinicians and patients, including increased consumer satisfaction.17-19 Given that many health organizations use paper records and portals do not provide access to narrative clinical information, it is expected the ongoing additional workload will continue as patients demand access to their entire health record.20-22

Assisting patients with processes on how to access to health records requires effective communication and engagement.23 However, little information is available about how healthcare providers support this process within legislative requirements.

Exploring the Critical Factors to Access Records

A systematic review using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)24 approach was used to select and review articles of full text in the English language and published in scholarly, peer-reviewed journals between 2008 and 2018. Using this approach with the online tool Covidence®, the authors identified and screened articles by title and abstract to reach joint agreement on the final full text of selected abstracts. Systematic reviews, conference papers, grey literature, and articles exclusively related to personal health records, primary healthcare, and the use of portals were excluded, as these did not meet the eligibility criteria.

The initial search yielded 2,719 articles, of which a total of 12 articles were included in this analysis. The majority (8/12) of articles were from the United States, with other papers from the United Kingdom (3/12), and Australia (1/12). As two-thirds (9/12) of the articles were commentary papers, with only three empirical papers identified, the papers were not quality-assessed. Using a thematic analysis approach, information was extracted from each article, and three common themes were identified across the reviewed literature: legislation, cost of releasing information, and processes and workforce impacts.

Legislation

The first theme, legislation, was discussed in almost all the selected articles in terms of patient rights to access health records and the relevant applicable legislation. Generally, legislation mandates a patient’s rights to access all the health records created about them and their care and treatment, regardless of how or when they were made or in what format (handwritten, paper, or electronic).25 Legislation and subsequent amendments can impact the number and types of requests for information.

In the United States, changes to the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and the American Recovery and Reinvestment Act of 2009 (ARRA) resulted in an increased number of requests.26,27 The provisions of HIPAA provide other benefits to patients, including the rights of HIM professionals to transfer records from another facility and the rights of patients to request amendments to their health records, providing them with greater control over their records.28 Some legislation is very specific with its requirements and outlines how and when information is released.

The US Health Information Technology for Economic and Clinical Health (HITECH) Act of 2013 meaningful use criteria provision requires a healthcare provider utilizing electronic health records to supply the patient with an electronic format copy of those records on request.29 It also specifies the time frame for the provision of available information to the consumer requesting access to personal health information from an eligible professional.30 The Health Information Bill of Rights (HIBOR) 2009 (US) advocates access to health information while the individual is being treated in hospital rather than waiting until discharge to apply for the release of information.31

Predominately, legislation requires patient consent to release information, including requests from third parties, such as insurance companies or legal firms, except when accompanied by a court order.32,33 However, there are exceptions to what is released and to whom it is released. Exceptions include information relating to the identity of a third party (e.g., another person or a health professional) or if there is a potential to cause harm to the individual if the information is disclosed.34,35

Costs of Releasing Information

Most articles discussed the costs of releasing information based on the costs of duplicating the records, the types of storage, and the staff required for undertaking the processes of providing copies of health records. These costs continue to remain high, with storage and retrieval of health documentation housed in multiple primary and secondary systems; however, these processes were expected to become easier as health information technology advanced.36 The use of electronic health records within the hybrid of systems for the release of information did not result in expected cost reductions as initially anticipated.37,38

Under the legislative provisions of HIPAA, costs associated with requesting access allows reasonable costs to be charged for copies of health records, including application fees, processing charges to reproduce copies of the health record, and labor costs for the supply of printing, photocopying, and postage.39 However, HIBOR states the consumer should have the right to access complete and accurate information free of charge. Given the contradiction and possible confusion for patients, in the United States, many health organizations offer free access.40

Variable and excessive costs have been described as a potential barrier and a discouragement to accessing information required to inform and manage health.41 Approximately 80 percent of hospitals in the United States outsourced the release of information function to relieve the administrative burden, reduce costs, and minimize risks associated with its processes and reduce any HIPAA liability exposure; however, many were unable to make a profit due to the limits placed on the chargeable fees.42,43 As the maximum amount of fees charged to release information were regulated, many hospitals maintained their own release of information workforce to balance costs.44

In Australia, under the Privacy Act 1988, an organization can charge administrative fees when providing copies of health records once access is granted; however, the fees must not be excessive, and it should not discourage the consumer from making an application to access their health records.45 While legislation provides an additional layer of protection of health information for the consumer, it increases the costs of releasing information for the healthcare provider.46

Processes and Workforce Impacts

A commonality to all countries was the processes of applying for health records and workforce impacts on health professionals who undertake the processes to release information. In the United Kingdom, United States, and Australia, applications are typically made through a formal process in writing, although some facilities will allow a verbal application.47-50 Information stored across a variety of sources and systems, including electronic records, may require many users with varying levels of access and can be quite complex to retrieve all components of a health record.51,52 The time to process a request can vary depending on the type of information requested, from a copy of a single report to any number of pages or records.53

Significantly, the release of health information remains a labor-intensive process. Many patients are unaware of their rights to access, review, or request information about their health records.54 To help patients determine what information is required for continuing care, HIM professionals are well positioned to undertake this step in patient-centered care to understand their needs and assist in the patient record requests.55 Statistics reveal more and more patients are requesting copies of their health records, and those involved in releasing information are considered instrumental in helping strengthen patient engagement to improve satisfaction.56 Patient engagement in terms of health means enabling people to work with healthcare providers so they may fully participate and make informed decisions to maintain their own healthcare.57

Discussion

The current review sought to explore the critical factors for patients when accessing hospital health records. It is evident that patients, as consumers of healthcare, need access to all the information created about them to enable active participation in their care and treatment, and access is not limited to hospital records. Multiple studies confirm when patients access their health records, it improves the relationship between the healthcare organization and the patient.58 A past barrier to patient engagement for healthcare organizations was the practice of charging patients to access their health information, which conflicts with the patient-centered movement promoting easy access.59

Legislation across Europe, the United States, and Australia was amended to ensure patients can access, change, and control the way their health information is used and made accessible to them.60,61 Legislation does not, however, provide clear or consistent recommendations to patients on the processes of how to apply, potential costs to access their health records, or impacts for healthcare organizations releasing the information. Critical factors affecting costs include the resources required to retrieve the information, which depends on the format of the health record (physical or electronic), and the HIM professionals required to process release of information requests.

Despite access available to patients via portals, studies indicate patient engagement remains low, uptake is not definitive, and, therefore, patient satisfaction is relatively unknown.62 The existence of portals must be considered in the future of health record requests. Portals have the potential to reduce the barriers to patients who want access to their health records by strengthening the patient/HIM relationship as release of information roles change to guide patients in their quest for safer, secure health information decisions.63 Portals, however, usually do not provide access to all information contained in the health record, as access to the narrative clinical documentation in the record is not typically provided through an online format.64

From an international perspective, countries sharing clinical data with patients, including England, Canada, the United States, Australia, and Israel, are considered to be in an established level of maturity by increasing patient engagement and participation in one’s healthcare.65 The future presents opportunities for the HIM professional to embrace technological changes, to engage with patients to navigate access to their health records, learn new skills in health record management, and improve customer services and, ultimately, the patient experience.66 As the roles of HIM professionals evolve, the fundamentals of dealing with consumer requests for records will remain. The focus will shift to increasing levels of consumer engagement as the emphasis on better informed patients continues to grow.

The findings of this review highlight opportunities for healthcare organizations and HIM professionals to facilitate changes and assist patients, through consumer engagement activities, in how patients request access to health records. This includes examining how patients apply to access their health records regardless of the format or storage method of the information. Improving patient engagement assists patients with their health information requests to enable informed decisions for patient-centred care. As the internet is a primary mechanism to search for and access health information,67 healthcare provider websites should be viewed as an online information system capable of being updated and improved to offer patients enhanced quality service.68

Conclusion

There is a clear gap in the literature examining patient requests for hospital or other healthcare provider health records through means other than portals due to limited research and differences in public healthcare. The lack of empirical studies about the patient knowledge or experience in making an application to access their health record was a limitation of this study. The systematic review was conducted to explore the critical factors in patient access to hospital health records, and the analysis revealed three common themes. The first theme identified patients’ rights to access information are mandated by legislation. Patients are taking control of their health as part of the patient-centered movement. Second, costs of releasing information affect both the patient applying for access and to the healthcare organization providing the information. Costs to retrieve and provide the information are affected by the format of the record, and charges may be applied when records are copied. Third, processing an application request can be labor intensive due to the type of record (paper, electronic, or digital) and where it is stored. These processes can impact the HIM workforce who complete the release-of-information requests.

To help navigate the options of how to access health records from any healthcare organization, not limited only to hospital records, HIM professionals can engage with patients to ensure they understand what health records they need to make informed decisions and take control of their healthcare choices. One method is to utilize the website of the healthcare organization to inform the patient of health records request processes. As stressed throughout this article, the need for patients to apply to a healthcare organization to access their complete records is important in the context of patient-centered care. However, further research is required to investigate the processes patients undertake to apply for access to healthcare provider records and how these can be promoted and provided through more readily accessible means for the average consumer.

Kay Nicol ([email protected]) is a doctoral candidate in the College of Health and Medicine at the University of Tasmania in Launceston, Tasmania, Australia.

Kerryn Butler-Henderson ([email protected]) is the director of digital health in the School of Health & Biomedical Sciences at RMIT University in Bundoora, Victoria, Australia, and an adjunct professor in the College of Health and Medicine at the University of Tasmania in Launceston, Tasmania, Australia.

Joan Carlini ([email protected]) is a senior lecturer and discipline leader in the Department of Marketing at Griffith Business School; a research committee external member at Gold Coast Hospital and Health Service; and a patient-centred health services associate member in the Menzies Health Institute Queensland at Griffith University in Southport, Queensland, Australia.

Kim Lehman ([email protected]) is a discipline leader of marketing in the Tasmanian School of Business and Economics at the University of Tasmania in Launceston, Tasmania, Australia.

Notes

  1. Prey, Jennifer E., Fernanda Polubriaginof, Gilad J. Kuperman, Victoria Tiase, Sarah A. Collins, and David K. Vawdrey. 2016. “International perspectives on sharing clinical data with patients.” International Journal of Medical Informatics 86: 135-141. https://doi.org/https://doi.org/10.1016/j.ijmedinf.2015.11.007. https://www.sciencedirect.com/science/article/pii/S1386505615300599.
  2. Bellenghi, G. M., B. Coffey, J. E. Fournier, and J. P. McDavid. 2008. “Release of information: are hospitals taking a hit?” Healthcare financial management: journal of the Healthcare Financial Management Association 62 (11): 118-120, 122. https://www.scopus.com/inward/record.uri?eid=2-s2.0-58149310868&partnerID=40&md5=b2fbe3336861bee3d9ccf71b692a4f19.
  3. Cave, Tabitha. 2012. “For the record: data protection obligations.” Nursing & Residential Care 14 (11): 604-606. https://doi.org/https://doi.org/10.12968/nrec.2012.14.11.604. http://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=104438564&site=ehost-live.
  4. Dimick, C. 2010. “The empowered patient.” Journal of AHIMA 81 (2): 26-31. http://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=105302110&site=ehost-live.
  5. Dunn, R. T. 2010. “Release of Information: costs remain high in a hybrid, highly regulated environment.” Journal of AHIMA 81 (11): 34-37. http://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=105009419&site=ehost-live.
  6. Ferrie, Nerissa. 2014. “Releasing medical records?: Take note.” Medicus 54 (2): 48. https://search.informit.com.au/documentSummary;dn=230816431581189;res=IELHEA.
  7. Griffith, R., and C. Tengnah. 2010. “Access to health records: the rights of the patient.” British Journal of Community Nursing 15 (7): 344-347. https://doi.org/10.12968/bjcn.2010.15.7.48773. http://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=105045748&site=ehost-live.
  8. Hanauer, D. A., R. Preib, K. Zheng, and S. W. Choi. 2014. “Patient-initiated electronic health record amendment requests.” Journal of the American Medical Informatics Association : JAMIA 21 (6): 992-1000. https://doi.org/https://doi.org/10.1136/amiajnl-2013-002574. https://www.scopus.com/inward/record.uri?eid=2-s2.0-84929043709&doi=10.1136%2famiajnl-2013-002574&partnerID=40&md5=99982920138bdd04ffa65910ddb8b0db.
  9. Koontz, Linda. 2015. “Health Information Privacy in a Changing Landscape.” Generations 39 (1): 97-104. http://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=103796363&site=ehost-live.
  10. Murphy-Abdouch, Kim. 2015. “Patient Access to Personal Health Information: Regulation vs. Reality.” Perspectives in Health Information Management 12 (Winter): 1-10. https://www-ncbi-nlm-nih-gov.ezproxy.utas.edu.au/pmc/articles/PMC4700868/.
  11. Prey.
  12. Bellenghi.
  13. Dunn.
  14. Essén, Anna, Isabella Scandurra, Reinie Gerrits, Gayl Humphrey, Monika Alise Johansen, Patrick Kierkegaard, Jani Koskinen, Siaw-Teng Liaw, Souad Odeh, Peeter Ross, and Jessica S. Ancker. 2018. “Patient access to electronic health records: Differences across ten countries.” Health Policy and Technology 7 (1): 44-56. https://doi.org/10.1016/j.hlpt.2017.11.003. http://www.sciencedirect.com/science/article/pii/S2211883717300722.
  15. Hanauer.
  16. Prey.
  17. Hanauer.
  18. Prey.
  19. Shaw, Tim, Monique Hines, and Candice Kielly-Carroll. 2017. Impact of Digital Health on the Safety and Quality of Health Care. ACSQHC (Sydney). https://www.safetyandquality.gov.au/wp-content/uploads/2018/02/Report-The-Impact-of-Digital-Health-on-Safety-and-Quality-of-Healthcar….pdf.
  20. Griffith.
  21. Hanuaer.
  22. Murphy-Abdouch.
  23. Dimick.
  24. Moher, David, Alessandro Liberati, Jennifer Tetzlaff, Douglas G. Altman, and Prisma Group. 2009. “Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement.” PLoS medicine 6 (7): e1000097-e1000097. https://doi.org/https://doi.org/10.1371/journal.pmed.1000097. https://pubmed.ncbi.nlm.nih.gov/19621072.
  25. Griffith.
  26. Cave.
  27. Griffith.
  28. Dimick.
  29. Murphy-Abdouch.
  30. Ibid.
  31. Dimick.
  32. Griffith.
  33. Cave.
  34. Ibid.
  35. Griffith.
  36. Dunn.
  37. Bellenghi.
  38. Dunn.
  39. Murphy-Abdouch.
  40. Dimick.
  41. Murphy-Abdouch.
  42. Bellenghi.
  43. Dunn.
  44. Bellenghi.
  45. Ferrie.
  46. Dunn.
  47. Cave.
  48. Ferrie.
  49. Griffith.
  50. Hanauer.
  51. Bellenghi.
  52. Dunn.
  53. Ibid.
  54. Bowen, Rita, Alisha Smith, and Keith W. Thomas. 2014. “Evolving ROI Specialists into Health Record Ambassadors.” Journal of AHIMA 85 (5): 30-36. http://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=109743153&site=ehost-live.
  55. Ibid.
  56. Ibid.
  57. Washington, Lydia. 2014. “Enabling consumer and patient engagement with health information.” Journal of AHIMA 85 (2): 56-59. https://login.ezproxy.utas.edu.au/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=cmedm&AN=24645404&site=eds-live.
  58. Giardina, Traber Davis, Shailaja Menon, Danielle E. Parrish, Dean F. Sittig, and Hardeep Singh. 2014. “Patient access to medical records and healthcare outcomes: a systematic review.” Journal of the American Medical Informatics Association : JAMIA 21 (4): 737-741. https://doi.org/10.1136/amiajnl-2013-002239. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4078277/.
  59. Washington.
  60. Mossaed, Shadi, Kevin Leonard, and Gunther Eysenbach. 2015. “Patient Preferences and Perspectives on Accessing Their Medical Records.” Journal of Medical Imaging and Radiation Sciences 46 (2): 205-214. https://doi.org/https://doi.org/10.1016/j.jmir.2014.11.001. http://www.sciencedirect.com/science/article/pii/S1939865414002677.
  61. Walsh, L., S. Hill, M. Allan, S. Balandin, A. Georgiou, I. Higgins, S. McCarthy, B. Hemsley, and B. Kraal. 2017. “A content analysis of the consumer-facing online information about My Health Record: Implications for increasing knowledge and awareness to facilitate uptake and use.” Health Information Management Journal: 106-115. https://doi.org/10.1177/1833358317712200. https://login.ezproxy.utas.edu.au/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=edselc&AN=edselc.2-52.0-85041051223&site=eds-live.
  62. Murphy-Abdouch, Kim, Diane Dolezel, and Alexander McLeod. 2017. “Patient Access to Personal Health Information: An Analysis of the Consumer’s Perspective.” Perspectives in Health Information Management: 1-19. https://login.ezproxy.utas.edu.au/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=edo&AN=124305210&site=eds-live.
  63. Bowen.
  64. Hanauer.
  65. Prey.
  66. Bowen.
  67. Scantlebury, Arabella, Alison Booth, and Bec Hanley. 2017. “Experiences, practices and barriers to accessing health information: A qualitative study.” International Journal of Medical Informatics 103: 103-108. https://doi.org/10.1016/j.ijmedinf.2017.04.018. http://www.sciencedirect.com/science/article/pii/S1386505617301065.
  68. Hsin Hsin, Chang, and Chang Ching Sheng. 2008. “An assessment of technology-based service encounters & network security on the e-health care systems of medical centers in Taiwan.” BMC Health Services Research 8: 1-13. https://doi.org/https://doi.org/10.1186/1472-6963-8-87. http://search.ebscohost.com/login.aspx?direct=true&db=asn&AN=38799295&site=ehost-live.

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