Setting Priorities for Research in Blood Donation and Transfusion: Outcome of the James Lind Alliance Priority-Setting Partnership

For which topic were research priorities identified?

blood donation and transfusion

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Research prioritization appears to be primarily driven by the academic interests of researchers and/or the finan cial interests of commercial companies. However, their priorities may only partially overlap with the needs of patients, caregivers (a caregiver or carer is an unpaid or paid mem ber of a person's social network who helps them with activi ties of daily living), and clinicians. Given that most research is publicly funded, it is essential that the research agenda is accountable to the public. Perhaps this is nowhere more true than in transfusion medicine, where the wider public also altruistically provides the blood upon which the field depends.

What was the objective?

to conduct the first research priority-setting exercise in transfusion medicine that includes the opinions of transfusion recipients and their caregivers, blood donors, and clinicians involved in transfusion

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP: forming steering group, study protocol designed and scope of project defined. Step 2: collecting research questions: via survey and search of existing literature, survey asked participants to submit up to three suggestions of important questions in the field, 817 submissions by participants, further 74 questions added based on literature search, total of 891 questions collected. Step 3: data processing: 652 raw questions brought forward for categorizing and summarizing, categorizing and summarizing research questions, resulting in 54 collated indicative questions, review of literature to check if questions already answered: 4 of the 54 indicative questions deemed to be answered and were therefore removed. Step 4: interim ranking: via survey, participants were asked to select the three questions out of the 50 indicative questions they believed to be the most important for research, the 50 questions were ranked individually by stakeholder group before an overall ranking (weighted by size of stakeholder group) was derived, 30 highest-ranking questions moved forward. Step 6: final prioritization: workshop: small group discussions and small group rankings of the 30 questions, new small groups formed and participants were asked to re-rank, plenary session on final ranking

Which stakeholders took part?

Blood recipients and their caregivers, blood donors, and clinicians involved in transfusion. Survey: 408 participants: 216 blood donors, 60 recipients of blood transfusion, 176 carers, 92 relatives or friends, 323 healthcare professionals (113 nurses, 158 doctors, etc.), 130 person with general interest in blood donation and blood transfusion and others. Interim ranking: 568 participants: 179 blood donors, 85 blood recipients, 15 carers, 24 relatives or friends, 242 healthcare professionals (78 nurses, 108 doctors, etc.), 23 persons with general interest in blood donation and blood transfusion. Workshop: 25 participants: clinicians, patients, family members, donor.

How were stakeholders recruited?

The survey was disseminated widely, a broad array of groups were approached representing donors, patients who had received or were likely to require transfusions, and health professionals involved in blood transfusion and donation. These groups were asked to use social media, blogs, or direct e-mail circulation to recruit participants. In addition, the survey was advertised through personal networks and social media by steering group members.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of 4 donor/patient/caregiver representatives, 6 clinical representatives from different specialties, 2 information scientists, the manager of the national audit of blood transfusion program, administrative support, and representatives from the JLA. The members met face-to-face 3 times and via telephone 18 times and were involved in all steps.