[Skip to Content]
Access to paid content on this site is currently suspended due to excessive activity being detected from your IP address 54.163.129.96. Please contact the publisher to request reinstatement.
[Skip to Content Landing]
Download PDF
Figure 1
Health information seeking. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "Internet not very or not at all important"; the dagger, the reference group was "last time used Internet for health information was more than 6 months, not sure, or never."

Health information seeking. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "Internet not very or not at all important"; the dagger, the reference group was "last time used Internet for health information was more than 6 months, not sure, or never."

Figure 2
Relationship with physician. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "have faith/trust in primary physician—agree or strongly agree."

Relationship with physician. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "have faith/trust in primary physician—agree or strongly agree."

Figure 3.
Health status. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "excellent general health."

Health status. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "excellent general health."

Figure 4
Health care use. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "no visits"; the dagger, the reference group was "none or 1 provider."

Health care use. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "no visits"; the dagger, the reference group was "none or 1 provider."

Figure 5
Health habits. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "health habits somewhat better or about the same as other of same age."

Health habits. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "health habits somewhat better or about the same as other of same age."

Figure 6.
Concern about health. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "not very or not at all worried"; the dagger, the reference group was "think about health rarely or never."

Concern about health. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "not very or not at all worried"; the dagger, the reference group was "think about health rarely or never."

Figure 7
Patient safety. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "not very or not at all concerned about error"; the dagger, the reference group was "suffered no harm."

Patient safety. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "not very or not at all concerned about error"; the dagger, the reference group was "suffered no harm."

Figure 8
Record access. Error bars represent 95% confidence intervals.

Record access. Error bars represent 95% confidence intervals.

Figure 9
Sociodemographic characteristics. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "date of birth before 1946."

Sociodemographic characteristics. Error bars represent 95% confidence intervals. The asterisk indicates the reference group was "date of birth before 1946."

Table 1. 
Distribution of Sample Characteristics and Percentage of Those With Each Characteristic Who Were Very Interested in Reading Their Medical Record*
Distribution of Sample Characteristics and Percentage of Those With Each Characteristic Who Were Very Interested in Reading Their Medical Record*
Table 2. 
Reasons for Wanting to Read the Medical Record
Reasons for Wanting to Read the Medical Record
1.
Bodenheimer  TLorig  KHolman  HGrumbach  K Patient self-management of chronic disease in primary care. JAMA. 2002;2882469- 2475
PubMedArticle
2.
Ni  HNauman  DBurgess  DWise  KCrispell  KHershberger  RE Factors influencing knowledge of and adherence to self-care among patients with heart failure. Arch Intern Med. 1999;1591613- 1619
PubMedArticle
3.
Sawicki  PT A structured teaching and self-management program for patients receiving oral anticoagulation: a randomized controlled trial. JAMA. 1999;281145- 150
PubMedArticle
4.
Marshall  MNShekelle  PGLeatherman  SBrook  RH The public release of performance data: what do we expect to gain? a review of the evidence. JAMA. 2000;2831866- 1874
PubMedArticle
5.
Institute of Medicine, Committee on Quality of Health Care in America, Crossing the Quality Chasm, A New Health System for the 21st Century.  Washington, DC National Academy Press2001;8
6.
Not Available, Speak up: national campaign urges patients to join safety efforts [press release].  Oakbrook Terrace, Ill Joint Commission on Accreditation of Healthcare Organizations March14 2002;
7.
Christianson  JBParente  STTaylor  R Defined-contribution health insurance products: development and prospects. Health Aff (Millwood). 2002;2149- 64
PubMedArticle
8.
Berland  GKElliott  MNMorales  LS  et al.  Health information on the Internet: accessibility, quality and readability in English and Spanish. JAMA. 2001;2852612- 2621
PubMedArticle
9.
Eng  TRMaxfield  APatrick  KDeering  MJRatzan  SCGustafson  DH Access to health information and support: a public highway or a private road? JAMA. 1998;2801371- 1375
PubMedArticle
10.
Goldsmith  J How will the Internet change our health system? Health Aff (Millwood). 2000;19148- 156
PubMedArticle
11.
Krumholz  HMRathore  SSChen  JWang  YRadford  MJ Evaluation of a consumer-oriented Internet health care report card: the risk of quality ratings based on mortality data. JAMA. 2002;2871277- 1287
PubMedArticle
12.
Silow-Carroll  SDuchon  L E-Health Options for Business: Evaluating the Choices—Field Report.  New York, NY The Commonwealth Fund March2002;Publication 508
13.
Not Available, Health Insurance Portability and Accountability Act: Access of Individuals to Protected Health Information, 65 Federal Register. 82823- 828242000;codified at 45 CFR § 164.524
14.
Cimino  JJLi  JMendonca  EASengupta  SPatel  VLKushniruk  AW An evaluation of patient access to their electronic medical records via the World Wide Web. Proc AMIA Symp. 2000;7 (suppl) 151- 155
PubMed
15.
Masys  DBaker  DButros  ACowles  KE Giving patients access to their medical records via the Internet: the PCASSO experience. J Am Med Inform Assoc. 2002;9181- 191
PubMedArticle
16.
Shenkin  BNWarner  DC Sounding board: giving the patient his medical record: a proposal to improve the system. N Engl J Med. 1973;289688- 691
PubMedArticle
17.
Blau  JN Patients reading their notes. Lancet. 1987;145
PubMedArticle
18.
Ross  AP The case against showing patients their records [editorial]. Br Med J (Clin Res Ed). 1986;292578
PubMedArticle
19.
Short  D Some consequences of granting patients access to consultants' records. Lancet. 1986;11316- 1318
PubMedArticle
20.
Strasser  AL Opening patient records to the public could hamper quality medical care [editorial]. Occup Health Saf. 1987;5641
PubMed
21.
Kirkham  M Client-held notes: talisman or a truly shared treasure? Mod Midwife. 1997;715- 17
PubMed
22.
Gilhooly  MLMcGhee  SM Medical records: practicalities and principles of patient possession. J Med Ethics. 1991;17138- 143
PubMedArticle
23.
Cohen  IR Should patients have access to their medical records? Med Malpract Cost Containment J. 1979;148- 51
PubMed
24.
Essex  N Access to medical records. Lancet. 1986;11445Article
25.
Gillon  R Should patients be allowed to look after their own medical records? J Med Ethics. 1991;17115- 116
PubMedArticle
26.
Hooker  LWilliams  J Parent-held shared care records: bridging the communication gaps. Br J Nurs. 1996;5738- 741
PubMed
27.
McCain  JL Dictum on dictation benefits patients. N C Med J. 1998;59341
PubMed
28.
Bronson  DLO'Meara  K The impact of shared medical records on smoking awareness and behavior in ambulatory care. J Gen Intern Med. 1986;134- 37
PubMedArticle
29.
Liaw  STRadford  AJMaddocks  I The impact of a computer generated patient held health record. Aust Fam Physician. 1998;27S39- S43
PubMed
30.
Simonton  MJNeuffer  CHStein  EJFuredy  RL The open medical record: an educational tool. J Psychiatr Nurs Ment Health Serv. 1977;1525- 30
PubMed
31.
Stein  EJFuredy  RLSimonton  MJNeuffer  CH Patient access to medical records on a psychiatric inpatient unit. Am J Psychiatry. 1979;136327- 329
PubMed
32.
Homer  CSEDavis  GKEveritt  LS The introduction of a woman-held record into a hospital antenatal clinic: the bring your own records study. Aust N Z J Obstet Gynaecol. 1999;3954- 57
PubMedArticle
33.
Liaw  TLawrence  MRendell  J The effect of a computer-generated patient-held medical record summary and/or a written personal health record on patients' attitudes, knowledge and behavior concerning health promotion. Fam Pract. 1996;13289- 293
PubMedArticle
34.
Melville  AW Patient access to general practice medical records. Health Bull (Edinb). 1989;475- 8
PubMed
35.
Elbourne  DRicharson  MChalmers  IWaterhouse  IHolt  E The Newbury Maternity Care Study: a randomized controlled trial to assess a policy of women holding their own obstetric records. Br J Obstet Gynaecol. 1987;94612- 619
PubMedArticle
36.
Jones  RPearson  JMcGregor  S  et al.  Randomised trial of personalised computer based information for cancer patients. BMJ. 1999;3191241- 1247
PubMedArticle
37.
Lovell  AZander  LIJames  CEFoot  SSwan  AVReynolds  A The St Thomas's Hospital Maternity Case Notes Study: a randomised controlled trial to assess the effects of giving expectant mothers their own maternity case notes. Paediatr Perinat Epidemiol. 1987;157- 66
PubMedArticle
38.
Greenfield  SKaplan  SWare  JYano  EMFrank  HJL Patients' participation in medical care: effects on blood sugar control and quality of life in diabetes. J Gen Intern Med. 1988;3448- 457
PubMedArticle
39.
Billault  BDegoulet  PDevries  CPlouin  PChatellier  GMenard  J Use of a standardized personal medical record by patients with hypertension: a randomized controlled prospective trial. MD Comput. 1995;1231- 35
PubMed
40.
Maly  RCBourque  LBEngelhardt  RF A randomized controlled trial of facilitating information giving to patients with chronic medical conditions: effects on outcomes of care. J Fam Pract. 1999;48356- 363
PubMed
41.
McCormick  MCShapiro  SStarfield  BH The association of patient-held records and completion of immunizations. Clin Pediatr (Phila). 1981;20270- 274
PubMedArticle
42.
Michael  MBordley  C Do patients want access to their medical records? Med Care. 1982;20432- 435
PubMedArticle
43.
Blackwell  DLTonthat  L Summary Health Statistics for the US Population: National Health Interview Survey, 1997.  Hyattsville, Md National Center for Health Statistics2002;Vital Health Stat 10, No. 204
44.
Princeton Survey Research Associates for the Pew Internet in American Life Project, Health Care and the Internet Survey.  August2000;Available at: http://www.pewinternet.org/reports/pdfs/PIP_Health_Questionnaire.pdf. Accessed December 23, 2003.
45.
The Kaiser Family Foundation/Agency for Health Care Research and Quality, National Survey on Americans as Health Care Consumers: An Update on the Role of Quality Information.  Rockville, Md Agency for Health Care Research and Quality December2000;
46.
Princeton Survey Research Associates for the Commonwealth Fund, Survey on Disparities in Quality of Health Care.  Washington, DC Princeton Survey Research Associates Spring2001;
47.
Fowles  JBCraft  C Patient/physician communication profile. McGee  JGoldfield  NRiley  KMorton  JCollecting Information From Health Care Consumers. Gaithersburg, Md Aspen Publishers Inc1996;
48.
Fowles  JBKind  EABraun  BLKnutson  DJ Consumer responses to health plan report cards in 2 markets. Med Care. 2000;38469- 481
PubMedArticle
49.
Dillman  DA Mail and Telephone Surveys: The Total Design Method.  New York, NY John Wiley & Sons Inc1978;
50.
Jones  TOSasser  WE Why satisfied customers defect. Harvard Bus Rev. 1995;7388- 99
51.
Hibbard  JHWeeks  EC Consumerism in health care: prevalence and predictors. Med Care. 1987;251019- 1032
PubMedArticle
52.
Banet  GAFelchlia  MA The potential utility of a shared medical record in a "first-time" stroke population. J Vasc Nurs. 1997;1529- 33
PubMedArticle
53.
Smedley  BDStith  AYNelson  ARCommittee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, Board on Health Sciences Policy, Institute of Medicine, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care.  Washington, DC National Academy Press2002;
54.
Walker  B The health care consumer: who is she and what does she want? Group Pract J. 2001;50 (9) 1- 7
55.
Isaacs  SL Men's and women's information needs when selecting a health plan: results of a national survey. J Am Med Womens Assoc. 1997;5257- 59
PubMed
56.
Norcross  WARamirez  CPalinkas  LA The influence of women on the health care–seeking behavior of men. J Fam Pract. 1996;43475- 480
PubMed
Original Investigation
April 12, 2004

Patients' Interest in Reading Their Medical RecordRelation With Clinical and Sociodemographic Characteristics and Patients' Approach to Health Care

Arch Intern Med. 2004;164(7):793-800. doi:10.1001/archinte.164.7.793
Abstract

Background  Although opportunities for patients to review their medical records are increasing, nothing is known about which patients want to take advantage of those opportunities. The objective of this study was to determine the proportion and characteristics of patients who are very interested in examining their clinic medical record and the reasons for their interest.

Methods  Cross-sectional, mailed survey (conducted in May 2001) to a random sample of 4500 adults who had a recent clinic visit.

Results  The response rate was 81%; 36% were very interested in reading their medical record (dependent variable). In multivariate logistic regression, the significantly related factors were seeking health information (finding the Internet very important for health information [adjusted odds ratio, 2.09], having a health newsletter subscription [adjusted odds ratio, 1.23], and using a health resource book in last month [adjusted odds ratio, 1.36]); being very concerned about errors in care (adjusted odds ratio, 2.52); and lacking trust in their physician (adjusted odds ratio, 1.55). Health status, use of health care, education, and income were not independently related to patients' interest. The most common reasons for patients wanting to look at their medical record were to see what their physician said about them (74%), to be more involved in their health care (74%), and to understand their condition better (72%).

Conclusions  Patients' interest in reading their medical record is better predicted by their consumer approach to health care than it is by their clinical characteristics. Demographic characteristics of sex and race were related, while socioeconomic factors of education and income were not.

The momentum to involve patients in all aspects of their health and health care is increasing. This movement is demonstrated in the drive to engage patients in managing their chronic diseases,13 in selecting care based on quality,4 in improving the quality of the care delivery system,5,6 and in increasing their share of costs.7 Simultaneously, information sources that support patients' and consumers' active participation are rapidly expanding. A plethora of new materials and Web-based health sites support chronic disease self-management810; compare the quality of physicians, hospitals, and health plans411; and help consumers select among health coverage options.12

In this consumer-centered context, one information source has often been ignored—the patient's own medical record. The Institute of Medicine recognized this gap in its report Crossing the Quality Chasm,5 and recommended that "patients should have unfettered access to their own medical information." The federally enacted Health Insurance Portability and Accountability Act13 expanded and unified disparate state regulations to ensure that patients will have access to their records. The arrival of electronic medical records may mean that patients will have easier access to their medical records.14,15

Although patients may soon have ready access to their medical records, the nature of their interest and degree of their demand is unknown. To help plan for this era, we designed the current study to understand the characteristics of patients who would be interested in looking at their medical records.

In 1973, a seminal editorial by Shenkin and Warner16 began the debate of whether patients should be given their medical records. Over the next quarter century, subsequent editorials have debated the merits of releasing medical records to patients, some believing that trust would be eroded,17 that patients would become needlessly worried,18 or that physicians would be constrained in what they would record.19,20 On the other hand, numerous benefits have been suggested, including empowering patients,21 correcting inaccuracies and encouraging better record keeping,2224 and improving patient-physician communication and increasing trust.22,2527

Empirical research regarding the effect of sharing medical records with patients is limited and dated. The conclusions of these studies are often constrained by small sample sizes and weak study designs. Taken together, they suggest that sharing the medical record has a modest, positive effect on knowledge or perceived knowledge,2834 on patient-physician relationships,3437 and even on limited health outcomes.28,3841 We found only 1 survey that asked patients if they were interested in seeing their medical record. In a 1988 survey of 200 indigent patients in Alabama, 80% reported that patients should be allowed to see their medical record and 52% believed they should be given a copy to take home.42

We approached this study with 3 broad theories about the factors related to patients' interest in their medical record. First, we hypothesized that patients who were sick and used more health services would be more interested in reading their medical record than patients who were healthy. Second, we were interested in people's characteristics as health care consumers. We hypothesized that people with a greater interest in health (independent of the medical condition) and concern about health care quality would be more interested in reading their medical record than those with less interest. Finally, we predicted that interest would be a function of higher socioeconomic status and being a woman.

METHODS
STUDY SETTING

This survey was conducted at Park Nicollet Health Services, a not-for-profit care system with 550 physicians who deliver both primary and specialty care to approximately 17% of the population in Minneapolis, Minn, and its suburbs.

PATIENTS, SAMPLE SIZE, AND POWER

Using a random number table, we randomly selected 4500 adult patients (age ≥18 years) from the 39 008 patients who had billable encounters in April 2001. Sample size was based on the desired precision of the estimate as well as the ability to detect a 5% difference on various characteristics of those very interested and those less than very interested. We hypothesized that 15% of respondents would be very interested. The 95% confidence interval (precision of the estimate) for the questionnaire with 3150 responses (15% being very interested) was 13.8% to 16.2%. Assuming an α error of .05 (2-sided test), we had 97% power to detect the difference of 5%.

QUESTIONNAIRE DEVELOPMENT

The 6-page, 57-item questionnaire included items from national surveys4348 and questions designed for this survey. The questionnaire included the following patient constructs: health status, health care use, health concern, health habits, relationship with personal physician, degree of involvement in health decision making, general information–seeking patterns, health information–seeking patterns, concern about medical errors, experience of medical injury, history of work in health care, history of reading medical record, and sociodemographic characteristics (age, sex, race and ethnicity, income, education, and employment status). The questionnaire also had items about which sections of the medical record patients would be interested in reviewing and a list of possible reasons why they would be interested. It incorporated a set of items addressing preferred modes of obtaining access to the medical record (paper or electronic; in the clinic or at home). We conducted cognitive testing on the new and previously used items on 8 patients. Two members of the research team asked patients in the clinic's laboratory waiting room to complete and critique the questionnaire. Minor formatting changes were made, and several items were reworded to make their meaning clearer. The investigators and their consultants again reviewed the items and the constructs of interest to assess face and content validity. The study protocol and questionnaire were reviewed for scientific merit by Park Nicollet Institute's Protocol Review Committee and for the protection of human subjects by its institutional review board.

DATA COLLECTION

A modified Dillman survey technique was used.49 Beginning in May 2001, we sent a series of 5 mailings to the patient sample: (1) a prenotification letter from the clinic medical director in week 1, (2) a cover letter, questionnaire, and $2 cash incentive in week 2, (3) a reminder postcard in week 3, (4) a second copy of the questionnaire to nonrespondents in week 5, and (5) a third copy of the questionnaire to remaining nonrespondents in week 7.

DEPENDENT MEASURE

The main outcome was patients' self-reported interest in examining their own medical record: "How interested are you in reading your own medical record? (1) very interested, (2) somewhat interested, (3) uncertain, (4) not very interested, (5) not at all interested."

ANALYSIS PLAN

The dependent measure was collapsed into 2 categories: very interested in reading your own record and less than very interested. We focused on the uppermost value "very interested" because the patient satisfaction literature indicates that people are more likely to act on the uppermost value rather than a combination of the top 2 values.50 We compared the patients' interest in reading the medical record with each of the independent measures using contingency tables with the χ2 statistic. Development of a logistic regression model began with grouping variables representative of the following major constructs: health status, health care use, concerns about health and health care, relationship with physician, health information seeking, and sociodemographic characteristics. Variables representing a construct were used as the independent variables in separate logistic regression models. To be included in a construct group the variables had to be significant at the .05 level. The variables that were significant in each construct model were then entered into the full logistic model. Three disease conditions (asthma, migraine, and hay fever) that were not significant in the construct models were included in the full logistic model because of their clinical interest to the investigators. Adjusted odds ratios and 95% confidence intervals were calculated for each variable included in the final model. The goodness-of-fit of the final model was assessed using the Hosmer and Lemeshow test. The result indicated that the null hypothesis of good fit could not be rejected.

RESULTS
RESPONSE

Forty-three questionnaires were undeliverable and were subtracted from the denominator. The response rate was 80.9% (3609/4457). Respondents were somewhat more likely to be women and to be older than nonrespondents. Sixteen of the returned questionnaires lacked responses to the dependent measure and could not be included in the analysis (n = 3593). Most of the respondents were women, well educated, and white (Table 1).

PROPORTION OF PATIENTS VERY INTERESTED

Over one third of the respondents (36%) were very interested in reading their clinic medical record. Another 43% were somewhat interested. At the bivariate level, many of the independent variables were significantly related to the patients' interest in reading the medical record (Table 1).

INTEREST AND CLINICAL CHARACTERISTICS

The results of the adjusted odds ratios for the full logistic model are shown in Figure 1, Figure 2, Figure 3, Figure 4, Figure 5, Figure 6, Figure 7, Figure 8, and Figure 9. In this multivariate analysis, health status, and use of health care were not independently related to the patients' interest in reading the medical record (Figure 3 and Figure 4).

INTEREST AND CONSUMER APPROACH TO HEALTH CARE

Various measures of health information seeking were independently related to being very interested in reading their medical record, including finding the Internet an important source of health information, having a health newsletter subscription, and using a health resource book in the last month (Figure 1). Lack of trust in their physician and being very concerned about patient errors remained related factors (Figure 2 and Figure 7).

Those who had looked at their medical record in the past were almost 3 times as likely to be very interested in reading their record than those who had not. Patients who did not know that they had the legal right to inspect their records were more than twice as likely to be very interested in reading their record (Figure 8).

INTEREST AND SOCIODEMOGRAPHIC CHARACTERISTICS

Educational level and income were not independently related to the patients' interest in reading the medical record. Women were almost twice as likely as men to be very interested, and being nonwhite remained a significant independent predictor (Figure 9).

OTHER FINDINGS

Respondents who were very interested in reading their medical record had many reasons, and most had more than 1 (Table 2). The most common reason was to be more active in their own health care. They wanted to see what their physician said about them and wanted to understand their condition better. Patients were least interested in trying to figure out what might be wrong with them; still, almost two thirds of respondents selected this reason.

We asked patients which specific portion of the medical record they were interested in seeing. Patients were most often interested in seeing their laboratory results (55.2%), closely followed by the physician's notes (53.3%). They were least interested in their past medications, but medications were still important to almost one third of respondents.

When asked how often they would like to look at their record, respondents reported that they wanted to read their medical records at regular, but not frequent, intervals. Almost half of the sample (48.3%) was interested in looking at their medical record once a year, 10.8% were interested in looking at it more often and 40.1% less often.

Only 11% strongly agreed that their physician would think it was a good idea for them to read their medical record. Another 34.1% agreed that their physician would think it was a good idea, 51% were uncertain, and 3.5% disagreed or strongly disagreed.

Patients were divided about their preferred mode of access. While half (49.3%) were interested in reading a paper copy of their medical record at home, a comparable number (43.8%) preferred obtaining access by an electronic version at a secure, private Web site. Written comments revealed the polarity of these views. One respondent wrote, "I do everything online. It would be great if all my records were accessible online and I could e-mail my doctor and/or nurse about a condition I am having and what they recommend." In contrast, another patient commented, "I do not want my records EVER put on a Web page. Nothing is private or secure. If they are, I will sue you royal."

COMMENT

This study reports the results of the first survey of patients' interest in reading their medical record in the era of the health consumer. Patients' interest is widespread and is associated with many attitudes and behaviors. Two of our initial hypotheses, however, were not supported. Interest is not a function of health status or health care use, nor is it a function of education or income. Interest is, however, driven by a general concern about health independent of heath status, by an interest in health information, and by concerns about patient safety and having a less trusting relationship with their primary physician. These findings suggest that a theory of health consumerism predicts interest in the medical record better than does a theory of clinical relevance.51 The findings lend credence to the concerns voiced by some that patient interest would be motivated by lack of trust.17 They also support others' contentions that patients' reading their medical records reflects a desire to be more involved in their own care.52

People who have demonstrated an interest in health by consulting other information channels such as print media and the Internet are very interested in reading their own medical record. The relationship with Internet use is linear (results not shown). This interest is a logical extension of their involvement in health and represents an opportunity for patients to use the most direct information source available about themselves.

Patients who have looked at their medical record in the past remain interested in reading it. This finding is consistent with earlier findings that patients who were given an opportunity to look at their records sustain that interest.37 It suggests that examining their medical record could become a routine, if not frequent, activity.

The current environment has heightened patients' concerns about medical errors, and this concern is directly related to an interest in reading the medical record. To the extent that we expect patients to take an active role in reducing medical errors,6 we have yet to exploit systematically 1 potentially useful tool—their own medical record. Patients could become more familiar with their own medical history and would be able to recognize and correct errors in their record.

In this population, patients with a less trusting relationship with their primary physician were more interested in reading their medical record. They may think that there is information in the record that has been hidden from them; they may think that there are some inaccuracies; or they may simply not understand their physician and are confused about their medical condition. Before launching the survey, we conducted qualitative interviews with 6 patients. Those who had strong relationships with their primary physician were relatively uninterested in their medical record because they thought that their physician had already shared all relevant information with them.

Even in this relatively homogeneous patient population, race remains a predictor of interest in one's medical record. Race may be a surrogate for a well-founded suspicion of the health care system.53 One means to dispel patient suspicion and increase trust in the health care system may be to provide ready access to the medical records.

We were not surprised to find that women are more interested in their medical record compared with men. Because women frequently serve as the health care decision makers in families, they may be attracted to this additional source of information.5456

Even in this well-educated population, one quarter of respondents were unaware that they had the legal right to examine their own medical record. In fact, believing that they did not have the right was associated with stronger interest in seeing the medical record—perhaps a "forbidden fruit" phenomenon.

The generalizability of the findings from this study is limited by the nature of the sample: suburban, middle-class Midwesterners, who were patients at 1 large multispecialty clinic. Nonetheless, it establishes a point of comparison against which the results of broader studies can be compared. The characteristics of this sample are typical of patients whom we expect to become most active in the burgeoning consumer movement and may represent the forefront of the demand for access to medical records. The study sample is also composed only of users of the health care system. People without access may exhibit other relationships with interest in reading the medical record.

The excellent response to the questionnaire (81%) lessens concern about response bias. It may also reflect a widespread interest in the topics covered by the survey.

CONCLUSIONS

We may be failing to use a potentially powerful tool, the medical record, to involve patients in their health care. In this population, over one third of patients report being very interested in reading their clinic records. Many are cautious, however, and would prefer to see a paper copy of their records rather than an electronic version. By providing access to the medical record in either paper or electronic versions, we may improve patients' understanding about their role in their condition, and we may improve the patient-physician relationship.

BackExtra

Corresponding author and reprints: Jinnet B. Fowles, PhD, Health Research Center, Park Nicollet Institute, 3800 Park Nicollet Blvd, Minneapolis, MN 55416 (e-mail: fowlej@parknicollet.com.

Accepted for publication May 13, 2003.

This study was supported by a grant from Arlene M. Carlson, Minnetonka, Minn.

This study was presented at Minnesota Health Services Research Conference; February 26, 2002; Minneapolis; and Minnesota VA Outcomes Research Center; December 19, 2002; Minneapolis.

We acknowledge Beverly Gray for managing the data collection process.

References
1.
Bodenheimer  TLorig  KHolman  HGrumbach  K Patient self-management of chronic disease in primary care. JAMA. 2002;2882469- 2475
PubMedArticle
2.
Ni  HNauman  DBurgess  DWise  KCrispell  KHershberger  RE Factors influencing knowledge of and adherence to self-care among patients with heart failure. Arch Intern Med. 1999;1591613- 1619
PubMedArticle
3.
Sawicki  PT A structured teaching and self-management program for patients receiving oral anticoagulation: a randomized controlled trial. JAMA. 1999;281145- 150
PubMedArticle
4.
Marshall  MNShekelle  PGLeatherman  SBrook  RH The public release of performance data: what do we expect to gain? a review of the evidence. JAMA. 2000;2831866- 1874
PubMedArticle
5.
Institute of Medicine, Committee on Quality of Health Care in America, Crossing the Quality Chasm, A New Health System for the 21st Century.  Washington, DC National Academy Press2001;8
6.
Not Available, Speak up: national campaign urges patients to join safety efforts [press release].  Oakbrook Terrace, Ill Joint Commission on Accreditation of Healthcare Organizations March14 2002;
7.
Christianson  JBParente  STTaylor  R Defined-contribution health insurance products: development and prospects. Health Aff (Millwood). 2002;2149- 64
PubMedArticle
8.
Berland  GKElliott  MNMorales  LS  et al.  Health information on the Internet: accessibility, quality and readability in English and Spanish. JAMA. 2001;2852612- 2621
PubMedArticle
9.
Eng  TRMaxfield  APatrick  KDeering  MJRatzan  SCGustafson  DH Access to health information and support: a public highway or a private road? JAMA. 1998;2801371- 1375
PubMedArticle
10.
Goldsmith  J How will the Internet change our health system? Health Aff (Millwood). 2000;19148- 156
PubMedArticle
11.
Krumholz  HMRathore  SSChen  JWang  YRadford  MJ Evaluation of a consumer-oriented Internet health care report card: the risk of quality ratings based on mortality data. JAMA. 2002;2871277- 1287
PubMedArticle
12.
Silow-Carroll  SDuchon  L E-Health Options for Business: Evaluating the Choices—Field Report.  New York, NY The Commonwealth Fund March2002;Publication 508
13.
Not Available, Health Insurance Portability and Accountability Act: Access of Individuals to Protected Health Information, 65 Federal Register. 82823- 828242000;codified at 45 CFR § 164.524
14.
Cimino  JJLi  JMendonca  EASengupta  SPatel  VLKushniruk  AW An evaluation of patient access to their electronic medical records via the World Wide Web. Proc AMIA Symp. 2000;7 (suppl) 151- 155
PubMed
15.
Masys  DBaker  DButros  ACowles  KE Giving patients access to their medical records via the Internet: the PCASSO experience. J Am Med Inform Assoc. 2002;9181- 191
PubMedArticle
16.
Shenkin  BNWarner  DC Sounding board: giving the patient his medical record: a proposal to improve the system. N Engl J Med. 1973;289688- 691
PubMedArticle
17.
Blau  JN Patients reading their notes. Lancet. 1987;145
PubMedArticle
18.
Ross  AP The case against showing patients their records [editorial]. Br Med J (Clin Res Ed). 1986;292578
PubMedArticle
19.
Short  D Some consequences of granting patients access to consultants' records. Lancet. 1986;11316- 1318
PubMedArticle
20.
Strasser  AL Opening patient records to the public could hamper quality medical care [editorial]. Occup Health Saf. 1987;5641
PubMed
21.
Kirkham  M Client-held notes: talisman or a truly shared treasure? Mod Midwife. 1997;715- 17
PubMed
22.
Gilhooly  MLMcGhee  SM Medical records: practicalities and principles of patient possession. J Med Ethics. 1991;17138- 143
PubMedArticle
23.
Cohen  IR Should patients have access to their medical records? Med Malpract Cost Containment J. 1979;148- 51
PubMed
24.
Essex  N Access to medical records. Lancet. 1986;11445Article
25.
Gillon  R Should patients be allowed to look after their own medical records? J Med Ethics. 1991;17115- 116
PubMedArticle
26.
Hooker  LWilliams  J Parent-held shared care records: bridging the communication gaps. Br J Nurs. 1996;5738- 741
PubMed
27.
McCain  JL Dictum on dictation benefits patients. N C Med J. 1998;59341
PubMed
28.
Bronson  DLO'Meara  K The impact of shared medical records on smoking awareness and behavior in ambulatory care. J Gen Intern Med. 1986;134- 37
PubMedArticle
29.
Liaw  STRadford  AJMaddocks  I The impact of a computer generated patient held health record. Aust Fam Physician. 1998;27S39- S43
PubMed
30.
Simonton  MJNeuffer  CHStein  EJFuredy  RL The open medical record: an educational tool. J Psychiatr Nurs Ment Health Serv. 1977;1525- 30
PubMed
31.
Stein  EJFuredy  RLSimonton  MJNeuffer  CH Patient access to medical records on a psychiatric inpatient unit. Am J Psychiatry. 1979;136327- 329
PubMed
32.
Homer  CSEDavis  GKEveritt  LS The introduction of a woman-held record into a hospital antenatal clinic: the bring your own records study. Aust N Z J Obstet Gynaecol. 1999;3954- 57
PubMedArticle
33.
Liaw  TLawrence  MRendell  J The effect of a computer-generated patient-held medical record summary and/or a written personal health record on patients' attitudes, knowledge and behavior concerning health promotion. Fam Pract. 1996;13289- 293
PubMedArticle
34.
Melville  AW Patient access to general practice medical records. Health Bull (Edinb). 1989;475- 8
PubMed
35.
Elbourne  DRicharson  MChalmers  IWaterhouse  IHolt  E The Newbury Maternity Care Study: a randomized controlled trial to assess a policy of women holding their own obstetric records. Br J Obstet Gynaecol. 1987;94612- 619
PubMedArticle
36.
Jones  RPearson  JMcGregor  S  et al.  Randomised trial of personalised computer based information for cancer patients. BMJ. 1999;3191241- 1247
PubMedArticle
37.
Lovell  AZander  LIJames  CEFoot  SSwan  AVReynolds  A The St Thomas's Hospital Maternity Case Notes Study: a randomised controlled trial to assess the effects of giving expectant mothers their own maternity case notes. Paediatr Perinat Epidemiol. 1987;157- 66
PubMedArticle
38.
Greenfield  SKaplan  SWare  JYano  EMFrank  HJL Patients' participation in medical care: effects on blood sugar control and quality of life in diabetes. J Gen Intern Med. 1988;3448- 457
PubMedArticle
39.
Billault  BDegoulet  PDevries  CPlouin  PChatellier  GMenard  J Use of a standardized personal medical record by patients with hypertension: a randomized controlled prospective trial. MD Comput. 1995;1231- 35
PubMed
40.
Maly  RCBourque  LBEngelhardt  RF A randomized controlled trial of facilitating information giving to patients with chronic medical conditions: effects on outcomes of care. J Fam Pract. 1999;48356- 363
PubMed
41.
McCormick  MCShapiro  SStarfield  BH The association of patient-held records and completion of immunizations. Clin Pediatr (Phila). 1981;20270- 274
PubMedArticle
42.
Michael  MBordley  C Do patients want access to their medical records? Med Care. 1982;20432- 435
PubMedArticle
43.
Blackwell  DLTonthat  L Summary Health Statistics for the US Population: National Health Interview Survey, 1997.  Hyattsville, Md National Center for Health Statistics2002;Vital Health Stat 10, No. 204
44.
Princeton Survey Research Associates for the Pew Internet in American Life Project, Health Care and the Internet Survey.  August2000;Available at: http://www.pewinternet.org/reports/pdfs/PIP_Health_Questionnaire.pdf. Accessed December 23, 2003.
45.
The Kaiser Family Foundation/Agency for Health Care Research and Quality, National Survey on Americans as Health Care Consumers: An Update on the Role of Quality Information.  Rockville, Md Agency for Health Care Research and Quality December2000;
46.
Princeton Survey Research Associates for the Commonwealth Fund, Survey on Disparities in Quality of Health Care.  Washington, DC Princeton Survey Research Associates Spring2001;
47.
Fowles  JBCraft  C Patient/physician communication profile. McGee  JGoldfield  NRiley  KMorton  JCollecting Information From Health Care Consumers. Gaithersburg, Md Aspen Publishers Inc1996;
48.
Fowles  JBKind  EABraun  BLKnutson  DJ Consumer responses to health plan report cards in 2 markets. Med Care. 2000;38469- 481
PubMedArticle
49.
Dillman  DA Mail and Telephone Surveys: The Total Design Method.  New York, NY John Wiley & Sons Inc1978;
50.
Jones  TOSasser  WE Why satisfied customers defect. Harvard Bus Rev. 1995;7388- 99
51.
Hibbard  JHWeeks  EC Consumerism in health care: prevalence and predictors. Med Care. 1987;251019- 1032
PubMedArticle
52.
Banet  GAFelchlia  MA The potential utility of a shared medical record in a "first-time" stroke population. J Vasc Nurs. 1997;1529- 33
PubMedArticle
53.
Smedley  BDStith  AYNelson  ARCommittee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, Board on Health Sciences Policy, Institute of Medicine, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care.  Washington, DC National Academy Press2002;
54.
Walker  B The health care consumer: who is she and what does she want? Group Pract J. 2001;50 (9) 1- 7
55.
Isaacs  SL Men's and women's information needs when selecting a health plan: results of a national survey. J Am Med Womens Assoc. 1997;5257- 59
PubMed
56.
Norcross  WARamirez  CPalinkas  LA The influence of women on the health care–seeking behavior of men. J Fam Pract. 1996;43475- 480
PubMed
×