Involving Burn Survivors in Agenda Setting on Burn Research: An Added Value?
For which topic were research priorities identified?
In which location was the research priority setting conducted?
Europe - Netherlands
Why was it conducted at all?
The role of burn survivors in burn research is usually restricted to being objects of study and beneficiaries of research results, while decision-making on research is traditionally the domain of a small group of experts, mainly scientists.
What was the objective?
to identify the research priorities of burn survivors and professionals and to investigate to what extent it is possible to come to a joint research agenda
What was the outcome?
a ranking list of 15 research topics
How long did the research prioritization take?
January 2006 - February 2007
Which methods were used to identify research priorities?
Delphi; focus group; meeting; survey
How were the priorities for research identified exactly?
Step 1: collecting research topics: via literature review and exploratory interviews. Step 2: focus groups with burn survivors: problems and questions of burn survivors were identified, discussed and clustered in themes, focus groups with healthcare professionals: research topics on rehabilitation, basic research, and prevention collected and discussed. Step 3: prioritization by burn survivors: survey with extensive list of 60 research topics clustered in 10 research themes: participants were asked to vote for their top 3 research topics within each of the themes and to select top 4 themes. Step 4: prioritization by professionals: Delphi survey resulting in research agenda on (pre-)clinical research consisting of eleven research topics and a research agenda on psycho-social and rehabilitation research comprising ten research topics. Step 5: dialogue meeting: working groups were asked to integrate the four priority lists into one list with thematized research topics, results were presented and discussed in plenary session and agreement reached on one integral priority list, in a last exercise the integral list was further prioritized: participants were asked to list the 7 themes in order of importance and to make a top ten of research topics. Step 6: report of dialogue meeting sent to participants
Which stakeholders took part?
14 burn survivors and 15 professionals (scientists from various disciplines, (plastic) surgeons, psychologists, rehabilitation practitioners and prevention experts).
How were stakeholders recruited?
To recruit burn survivors, a convenience sample was used; invitations were broadly sent out and all those interested to participate in the focus groups were included. The VMB made an announcement in their journal and the NBS invited members by letter. In addition, announcements were put on the websites of the NBS and VMB. The VMB distributed questionnaires to all their members, while the NBS distributed questionnaires to an a-select sample of their members; in total they distributed 801 questionnaires. Two weeks after distribution a reminder was sent. In addition, questionnaires were distributed via a rehabilitation centre, the Foundation ‘Child and Burns', and the holiday camps for adolescents with burns to reach people with burns who are probably not a member of the VMB or NBS.
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.