Describing Patients' Needs in the Context of Research Priorities in Patients with Multiple Myeloma or Waldenstrom's Disease: A Truly Patient-Driven Study
For which topic were research priorities identified?
multiple myeloma (Waldenstrom's disease)
In which location was the research priority setting conducted?
Europe - Netherlands
Why was it conducted at all?
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.
What was the objective?
to describe the patients' needs in the context of research priorities on important topics for quality of care improvement
What was the outcome?
a ranking list of 10 research topics
How long did the research prioritization take?
No information provided.
Which methods were used to identify research priorities?
focus group; interview; meeting; survey
How were the priorities for research identified exactly?
Step 1: exploration phase: interviews with patient representatives to clarify points of view and wishes. Step 2: consultation phase: individual in-depth interviews with patient organizations, participants were asked to think freely about spending research money on any topic, additionally 2 focus groups, interviews and focus groups coded. Step 3: prioritization phase: survey: participants were asked to rate each of the 54 questions. Step 4: integration phase: meeting: results of survey were discussed, feedback from patient organizations was integrated
Which stakeholders took part?
Patients. Interviews: 10 participants. Focus groups: 20 participants. Survey: 787 participants: 642 patients and 143 partners and others. Meeting: patients.
How were stakeholders recruited?
The patient organization board recruited regional representatives of the patient organization, all being patients themselves.
Were stakeholders actively involved or did they just participate?
Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.