Describing patients’ needs in the context of research priorities in patients with multiple myeloma or Waldenstrom’s disease: A truly patient-driven study

Background: To ensure true patient-centered care, the urgency of patient participation in research is increasingly recognized. This study takes this one step further and reports on patient participation in describing patients' needs for improving quality of care in the context of research priorities a challenging partnership with patients in research as we yet lack experience in the Netherlands.

Objectives: 1) To illustrate the process of describing patients' needs in the context of research priorities for patients with blood cancer (multiple myeloma or Waldenstrom's disease) with the purpose to improve the quality of health care. 2) To describe the experienced needs in the context of research priorities in the patients.

Methods: Following the Dialogue Model, we first established a balanced project group and agreed on the study protocol, followed by the actual data collection of which the most important steps included: individual interviews and focus groups with purposeful samples of patients, a questionnaire that was sent to all members of the patient organization (n = 1,782), and a dialogue meeting with patients to prioritize the final issues.

Results: 1) Ten interviews and two focus groups were successfully conducted. Response rate on the questionnaire averaged 44%. 2) Main research topics: improved information on all aspects of disease and treatment, involving patients in decision making, organization of care and the burden of neuropathy.

Discussion: Given the process of data collection we believe that the patients' needs for quality of care improvements in the context of research priorities that were described are valid and representative. The novelty of this approach was that patients themselves contacted researchers to assess the patients' priorities in a scientific and reliable way.