Listening to and Involving Consumers in Research

We are at an important juncture in the health care field, with a growing emphasis on patient-centered care that is driven by patients’ preferences. Patients are increasingly asked to give their opinions in satisfaction surveys. They are regularly invited to test new products and provide feedback to researchers—information that is then used to inform broader decisions that have an impact on patients’ health and well-being. Consumers are invited to describe their treatment preferences and experiences on user-friendly, Web-based platforms, such as the one developed by Patricia Deegan, to facilitate shared decision making with treatment providers.

The role of patient interviews, which were once used to collect qualitative data usually regarded as peripheral, has come a long way, and today we are deepening our understanding of the client voice in a critically important arena previously underutilized in research and policy. Two articles in this issue reflect the emphasis on listening to patients and on ensuring their role in the design and conduct of research that will affect their health and well-being. In a study of violence risk assessment, Skeem and colleagues asked the patients themselves to assess their risk of future violence, and the researchers later examined the accuracy of patients’ self-perceptions. In the second study, O’Donoghue and colleagues employed mental health service users to conduct hospital discharge interviews, seeking to determine whether inpatients would give a different account of their hospital stay to a fellow service user.

From a recovery perspective, asking clients to assess their experiences promotes a useful and healing exercise. The “telling” of his or her experience often fosters expressions of thoughts and emotions that enrich the dialogue with the treatment provider. Over many decades, the peer and family movements in the mental health field have utilized patient interview models, and with varied success the information provided has aided these groups in advocacy efforts and program development and evaluation. These groups have also employed consumers to conduct interviews and to evaluate the information that they gather.

Hearing clients’ perspectives and opening up a dialogue that incorporates their views enables us to consider in a clearer light the issues that affect them, which in turn will inform the development of recovery-oriented services that engage and heal. Expanded collection of such data could also better educate policy makers and thought leaders in the public and private sectors. The research conducted by Skeem and O’Donoghue and their colleagues is helping us to better understand the perspectives of service users—the recipients of care—and to appreciate their insights.