Damschroder Laura J., Joy L. Prittsc, Michael A. Neblod, Rosemarie J. Kalarickalb , John W. Creswelle , Rodney A. Haywarda ”Patients, privacy and trust: Patients’ willingness to allow researchers to access their medical records” Social Science and Medicine 64 (2007) 223-235, 11 October 2006

The researchers administered a first survey, deliberation surveys, and a follow up survey 4-6 weeks later. The first survey was designed to figure out peoples’ “trust in various healthcare entities, attitudes about privacy, prior knowledge about research and privacy, and general demographic information” (226). The surveys from deliberation and the follow up survey had measures specific to the situations being considered. The first survey and follow up surveys were done over the phone and the deliberation surveys were written.

The data includes: age, race/ethnicity, education, employment, if they are disabled, if they trust their doctor, if they have heard of HIPPA, if they were aware that their medical record could be used without permission, if they would be inclined to give permission for researchers to use their record, how important they think medical research is, how important getting permission is, the trust they have to keep records confidential, and if the security system should be as secure for research as it is for usual medical practice.

The researchers conducted quantitative and qualitative analyses. For quantitative they used Chi-square tests (to test a statistical hypothesis when the null hypothesis is true) for categorical data and ANOVA (inferences about means made by analyzing variance) tests for continuous data, “to test for differences between (1) the four locations; and (2) veterans who agreed to participate in the baseline and follow up surveys but did not consent to participating in a deliberation session” (226). All their statistical analysis was done with Stata 8.2. For the qualitative analysis they looked for themes from the transcripts they had of the deliberations. The purpose of this was to see if there were common concerns or thoughts.

 

http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.391.2827&rep=rep1&type=pdf