1. 1 Which patients want to read their medical records and why? Jinnet B Fowles PhD, Allan C Kind MD, Cheryl Craft RN, Elizabeth A Kind MS RN, Jeffrey L Mandel MD, Susan Adlis MS Health Research Center Park Nicollet Institute, Minneapolis, MN

2. 2 Study Objectives 1.Who wants to read their medical record? 2.Why do they want to? 3.What parts do they want to read? 4.How often do they want to read it?

3. 3 Study Design Cross-sectional mailed survey, June 2001 Pre-notification letter + 3 waves $2 incentive Large suburban multi-specialty clinic Sample size: 4,500 Response rate: 81% (n = 3,609)

4. 4 Sample Characteristics

5. 5

6. 6 Who? Some general characteristics (logistic regression results)

7. 7 Who? Characteristics that suggest they like information (logistic regression results)

8. 8 Who? Characteristics that suggest worry, fear and distrust (logistic regression results)

9. 9 Some characteristics that did not predict who was very interested in reading their record (logistic regression results) Poor health status Frequency of visits to clinic Had harm from medical error in past year Age Body mass (obesity) Smoking history Depression

10. 10 Why? Reasons for wanting to read their medical record

11. 11 What? Parts of the record they wanted to see

12. 12 How often do these patients wish to read their record?

13. 13 “My doctor would think it was a good idea for me to read my record”

14. 14 Wide range of opinions about Internet access PRO “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’m having and what they recommend.” CON “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. “ Preferred Medium

15. 15 Conclusions Many people want to see their record, but not often Interest in the medical record is not driven by clinical concerns Interest is related to health information rather than health status Interest is related to lack of trust and worry

16. 16 Implications for Practice Easier medical record access could: –support health consumers –be a powerful self management tool –help avert medical errors Patients may not be ready to cross the digital divide Providers are missing a good bet

17. 17 Funder: Tonkawa, Inc.