The effects of promoting patient access to medical records: a review

Analysis of existing literature on patients accessing medical records.

Learning points from paper

Overall, modest benefits, e.g. in enhancing doctor-patient communication.
Minimal risks, e.g. increasing patient worry or confusion.
But studies limited in quality and low in statistical.
HIPAA stipulates that “patients must be able to see and get copies of their records, and request amendments”. Similar legal efforts are under way in Canada,⁴ the United Kingdom,⁵ Ireland,⁶ South Africa,⁷ and Australia.⁸
The review of medical case notes found that over half of the case notes were “puzzling or unintelligible” to the patient (some because they were illegible), “alarming or worrying,” “apparently insulting or objectionable,” or “apparently deceptive.” (See Short D. Some consequences of granting patients access to consultants’ records. Lancet 1986;1:1316–1318.)
- Better charting practices (particularly recording legibly and avoiding disparaging characterizations of patients that are medically irrelevant) would have eliminated many of the concerns, it is hard to draw generalizations about the effects of a patient-accessible medical record from this study.
The psychiatric case notes appeared to be even more problematic—among records that were legible, roughly 80% contained entries that were potentially puzzling, offensive, alarming, or upsetting, as determined both by practitioners and patients. (See Sergeant H. Should psychiatric patients be granted access to their hospital records? Lancet 1986;2:1322–1325; Bloch S, Riddell CE, Sleep TJ. Can patients safely read their psychiatric records? Implications of freedom of information legislation. Med J Aust 1994;161:665–666.)
- Psychiatric information and terminology may simply be intrinsically more sensitive than medical information. For instance, whereas patients and professional raters found the formulation “chronic schizophrenic” to be offensive, the same reviewers did not take offense at the formulation “chronic diabetic” or “known case of SLE.” (See Crichton P, Douzenis A, Leggatt C, Hughes T. Are psychiatric case notes offensive? Psychiatr Bull 1992;16:675–677.)

Critique of paper

Other comments

Table 1

Outcomes from Studies of Patients Who Received Their Records: Summary of Evidence

Outcome	Controlled Trial: Statistically Significant Differences Between Groups	Controlled Trial: Nonsignificant Differences Between Groups	Descriptive Information: Quantitative	Descriptive Information: Anecdotal
Patient interest and acceptance			15 studies^9,^28–^30,^32,^44,^46,^50–^54,^57–⁵⁹
Causing confusion and misunderstandings		1 study⁵⁴	8 studies^30,^33,^46,^47,^50–^52,⁶¹	2 studies^28,⁵³
Educating patients	2 studies^43,⁴⁴	3 studies^51,^54,⁵⁸	7 studies^34,^46,^52,^57,⁶¹
Creating anxiety		3 studies^51,^54,⁵⁶	5 studies^30,^46,^52,^57,⁶¹	2 studies^9,²⁹
Providing reassurance		1 study⁵¹	3 studies^30,^41,⁴⁶	1 study⁵⁰
Empowering patients	2 studies^54,⁵⁶	1 study⁵³	3 studies^41,^52,⁵⁷	2 studies^28,⁶⁰
Promoting adherence	1 study⁴³	5 studies^44,^49,^53,^54,⁵⁸	1 study⁴¹
Concerns about sensitive items			1 study³²	3 studies^29,^33,⁵²
Concerns about confidentiality			3 studies^9,^33,⁵⁷	1 study⁶⁰
Improving doctor-patient communication	3 studies^53,^54,⁵⁶		1 study⁴⁶	3 studies^51,^48,⁶⁰
Improving patient satisfaction		6 studies^49,^51,^53,^54,^56,⁵⁸	1 study⁴⁶	4 studies^28,^29,^50,⁵⁹
Facilitating correction of errors			7 studies^32,^42,^46,^48–^50,⁵⁷	4 studies^9,^27,^51,⁶⁰
Effects on documentation	1 study⁵⁹	1 study⁵⁸	1 study⁵⁷	1 study⁴⁵
Demands on staff time		1 study⁵⁴	1 study⁵⁵	5 studies^31,^46,^50,^51,⁶⁰

J Am Med Inform Assoc. 2003 Mar–Apr; 10(2): 129–138.

Citation and Abstract

J Am Med Inform Assoc. 2003 Mar-Apr;10(2):129-38. The effects of promoting patient access to medical records: a review. Ross SE, Lin CT.

Erratum in: J Am Med Inform Assoc. 2003 May-Jun;10(3):294.

Division of General Internal Medicine, University of Colorado Health Sciences Center, Denver, CO, USA. Steve.Ross@uchsc.edu

The Health Insurance Privacy and Portability Act (HIPPA) stipulates that patients must be permitted to review and amend their medical records. As information technology makes medical records more accessible to patients, it may become more commonplace for patients to review their records routinely. This article analyzes the potential benefits and drawbacks of facilitating patient access to the medical record by reviewing previously published research. Previous research includes analysis of clinical notes, surveys of patients and practitioners, and studies of patient-accessible medical records. Overall, studies suggest the potential for modest benefits (for instance, in enhancing doctor-patient communication). Risks (for instance, increasing patient worry or confusion) appear to be minimal in medical patients. The studies, however, were of limited quality and low statistical power to detect the variety of outcomes that may result from implementation of a patient-accessible medical record. The data from these studies lay the foundation for future research.

PMID: 12595402 [PubMed - indexed for MEDLINE]

PMCID: PMC150366

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Posted 16:02, 20 Jul 2010