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The Importance of Purpose: Moving Beyond Consent in the Societal Use of Personal Health InformationConsent for Secondary Use of Health Information

David Grande, MD, MPA; Nandita Mitra, PhD; Anand Shah, MD, MSHP; Fei Wan, MS; and David A. Asch, MD, MBA
[+] Article, Author, and Disclosure Information

From University of Pennsylvania, Philadelphia, Pennsylvania, and Parkland Health and Hospital System, Dallas, Texas.

Disclaimer: Dr. Grande had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Grant Support: By the National Human Genome Research Institute (grant 5R21HG006047-02; Dr. Grande).

Disclosures: Disclosures can be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M14-1118.

Reproducible Research Statement:Study protocol: Available from Dr. Grande (e-mail, dgrande@wharton.upenn.edu). Statistical code and data set: Not available.

Requests for Single Reprints: David Grande, MD, MPA, 3641 Locust Walk, Colonial Penn Center 407, Philadelphia, PA 19014; e-mail, dgrande@wharton.upenn.edu.

Current Author Addresses: Dr. Grande: 3641 Locust Walk, Colonial Penn Center 407, Philadelphia, PA 19104.

Dr. Mitra and Mr. Wan: Department of Biostatics and Epidemiology, University of Pennsylvania Perelman School of Medicine, 212 Blockley Hall, 423 Guardian Drive, Philadelphia, PA 19104.

Dr. Shah: Parkland Center for Clinical Innovation, 8435 Stemmons Freeway, Suite 1150, Dallas, TX 75247.

Dr. Asch: Division of General Internal Medicine, University of Pennsylvania Perelman School of Medicine, 1123 Blockley Hall, 423 Guardian Drive, Philadelphia, PA 19104.

Author Contributions: Conception and design: D. Grande, N. Mitra, A. Shah, D.A. Asch.

Analysis and interpretation of the data: D. Grande, N. Mitra, F. Wan, D.A. Asch.

Drafting of the article: D. Grande, N. Mitra, A. Shah.

Critical revision of the article for important intellectual content: D. Grande, N. Mitra, D.A. Asch.

Final approval of the article: D. Grande, N. Mitra, A. Shah, D.A. Asch.

Statistical expertise: N. Mitra, F. Wan.

Obtaining of funding: D. Grande.

Administrative, technical, or logistic support: D. Grande.

Collection and assembly of data: D. Grande.

Ann Intern Med. 2014;161(12):855-862. doi:10.7326/M14-1118
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Background: Adoption of electronic health record systems has increased the availability of patient-level electronic health information.

Objective: To examine public support for secondary uses of electronic health information under different consent arrangements.

Design: National experimental survey to examine perceptions of uses of electronic health information according to patient consent (obtained vs. not obtained), use (research vs. marketing), and framing of the findings (abstract description without results vs. specific results).

Setting: Nationally representative survey.

Participants: 3064 African American, Hispanic, and non-Hispanic white persons (response rate, 65%).

Measurements: Appropriateness of health information use described in vignettes on a scale of 1 (not at all appropriate) to 10 (very appropriate).

Results: Mean ratings ranged from a low of 3.81 for a marketing use when consent was not obtained and specific results were presented to a high of 7.06 for a research use when consent was obtained and specific results were presented. Participants rated scenarios in which consent was obtained as more appropriate than when consent was not obtained (difference, 1.01 [95% CI, 0.69 to 1.34]; P < 0.001). Participants rated scenarios in which the use was marketing as less appropriate than when the use was research (difference, −2.03 [CI, −2.27 to −1.78]; P < 0.001). Unconsented research uses were rated as more appropriate than consented marketing uses (5.65 vs. 4.52; difference, 1.13 [CI, 0.87 to 1.39]).

Limitations: Participants rated hypothetical scenarios. Results could be vulnerable to nonresponse bias despite the high response rate.

Conclusion: Although approaches to health information sharing emphasize consent, public opinion also emphasizes purpose, which suggests a need to focus more attention on the social value of information use.

Primary Funding Source: National Human Genome Research Institute.


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Figure 1.

Experimental design of survey vignettes.

Eight vignettes were developed by systematically varying the 3 attributes: consent (not obtained or obtained), use (research or marketing), and framing of use (an abstract future use or a past specific use with results). The vignettes that reported specific results are written in the past tense.

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Figure 2.

Appropriateness of information use.

The interaction of race/ethnicity with different health information uses (research or marketing) and different consent policies (consent obtained or consent not obtained) are shown but holds the framing (a future use) constant. The coefficients represent differences in appropriateness ratings on a scale of 1 (not at all appropriate) to 10 (very appropriate). The reference group is white participants rating a scenario when consent was not obtained and the health information would be used for research. The error bars indicate 95% CIs for the point estimates.

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