Involving Consumers in Research and Evaluation

An article about “Client Involvement in Public Administration Research and Evaluation” by my friends Rick Beinecke (Department of Public Management, Suffolk University) and Jon Delman (Executive Director, Consumer Quality Initiatives), makes a strong case for involving consumers in the research on/evaluation of public programs.

I think their argument is spot-on.

I’ve seen how consumer involvement can contribute to research/evaluation in mental health. Clinicians focus on variables like adherence to medication and utilization of professional services. Consumers focus on variables like housing, employment, and, most broadly, a meaningful life. Research and evaluation need both perspectives.

The Beinecke/Delman article introduced me to a set of eight “Principles and Indicators of Successful Consumer Involvement in the [British National Health Service]" that I hadn’t seen before. It is easy for professionals to mouth off about the value of consumer involvement and for consumer advocates to demand “respect” and “empowerment.” The NHS principles and indicators tell us how the rhetoric about consumer participation can be put into action on the ground. (In the list that follows, the indicators follow the principles as bullets):

1. The roles of consumers are agreed between the researchers and consumers involved in the research.
• The roles of consumers in the research were documented.

2. Researchers budget appropriately for the costs of consumer involvement in research.
• Researchers applied for funding to involve consumers in the research.
• Consumers were reimbursed for their travel costs.
• Consumers were reimbursed for their indirect costs (e.g. carer costs).

3. Researchers respect the differing skills, knowledge and experience of consumers.
• The contribution of consumers’ skills, knowledge and experience was included in research reports and papers.

4. Consumers are offered training and personal support, to enable them to be involved in research.
• Consumers’ training needs related to their involvement in the research were agreed between consumers and researchers.
• Consumers had access to training to facilitate their involvement in the research.
• Mentors were available to provide personal and technical support to consumers.

5. Researchers ensure that they have the necessary skills to involve consumers in the research process.
• Researchers ensured that their own training needs were met in relation to involving consumers in the research.

6. Consumers are involved in decisions about how participants are both recruited and kept informed about the progress of the research.
• Consumers gave advice to researchers on how to recruit participants to the research.
• Consumers gave advice to researchers on how to keep participants informed about the progress of the research.

7. Consumer involvement is described in research reports.
• The involvement of consumers in the research reports and publications was acknowledged.
• Details were given in the research reports and publications of how consumers were involved in the research process.

8. Research findings are available to consumers, in formats and in language they can easily understand.
• Research findings were disseminated to consumers involved in the research in appropriate formats (e.g. large print, translations, audio, Braille).
• The distribution of the research findings to relevant consumer groups was in appropriate formats and easily understandable language.
• Consumers involved in the research gave their advice on the choice of methods used to distribute the research findings.

Several years ago, Norman Daniels and I did a series of articles about “Strengthening the Consumer Voice in Managed Care.” If you’re interested in reading more about consumer involvement, you may find the article about the Philadelphia Consumer Satisfaction Team worth reading about.