Privacy & Use of Personal Information for Health Research

Dr. Don Willison

Comparing attitudes & expectations among people with selected stigmatizing conditions and with the general public

The study explores how the attitudes of people with a range of potentially stigmatizing health conditions compare with those of the general public and with one another with regard to the need for consent for the use of their personal information for different types of observational health research?

Prior Hypothesis

We expect attitudes to vary across health conditions.  (See Section 3.1 below for chosen health conditions.) We expect some groups (e.g. those with HIV/AIDS) will be more restrictive than the general public and others (e.g. hypertension) more permissive.  Collectively, though, people with the selected conditions will opt for greater control over use of their information than will the general public. 

Secondary Questions

1. What personal factors are associated with attitudes toward consent for use of personal information for health research across stigmatizing conditions?
2. Among people with potentially stigmatizing health conditions, how do the following influence consent preferences in the use of personal information for health research:
   1. the types of research uses of the information
   2. the safeguards and mechanisms of governance over use of personal information for health research
3. What are the challenges in contacting patients with potentially stigmatizing medical conditions to conduct this kind of research?

Survey

Through a combination of telephone and internet, we will survey people with the following stigmatizing medical conditions: alcoholism; chronic depression; HIV/AIDS; breast cancer; and lung cancer.  We will also interview people with a lower stigma potential – diabetes and hypertension – and from the general public.  Survey participants with these health conditions will be drawn from two sources: (1) specialty treatment clinics or family physicians’ practices; and (2) a disease-based survey panel maintained by a public polling firm, Harris Interactive Inc. We anticipate different methodologic challenges and selection biases with each source.  This will be the subject of secondary research questions. 

Focus Groups

Following initial analysis of survey data, we will convene focus groups with volunteers from each of the potentially stigmatizing conditions to ascertain: reasons behind the responses given and insight into the possible reasons for the differences observed across groups.

Papers

Family Practice doi:10.1093/fampra/cml013_ The Author (2006). Published by Oxford University Press. All rights reserved.