Treatment uncertainties in blood donation and blood transfusion: involvement of patients and donors as well as clinicians

ID: 

326

Session: 

Poster session 3

Date: 

Tuesday 18 September 2018 - 12:30 to 14:00

All authors in correct order:

Brunskill S1, Hibbs S2, Donald G3, Saunders H4, Murphy M5
1 NHS Blood and Transplant, UK
2 Bart's Health NHS Trust, UK
3 Patient representative on the National Blood Transfusion Committee, UK
4 Patient representative on the JLA PSP Project Steering Group, UK
5 National Institute for Health Research (NIHR) Oxford Biomedical Research Centre, Oxford University Hospitals and the University of Oxford, and NHS Blood & Transplant, UK
Presenting author and contact person

Presenting author:

Susan Brunskill

Contact person:

Susan Brunskill
Abstract text
Background:
It is crucial that medical research funding prioritises the issues that really matter to all stakeholder groups. The James Lind Alliance (JLA) works towards this end by forming Priority Setting Partnerships (PSPs) that identify and prioritise treatment uncertainties.

Objectives:
To identify and prioritise treatment uncertainties for blood donation and blood transfusion.

Methods:
A PSP follows a set methodology (http://www.jla.nihr.ac.uk/). In brief, this PSP conducted an initial survey and disseminated it to relevant stakeholders to elicit uncertainties about blood donation and blood transfusion. These uncertainties were collated by steering group pairs working independently using a taxonomy based on the 'blood journey' from recruitment of donors through to the administration of a transfusion. The collated questions were checked by members of NHSBT's Systematic Review Initiative to see whether existing 'up-to-date', good quality research could answer them. The unanswered uncertainties went through a three-stage process of prioritisation (a second survey, generation of a ranked list of questions and a stakeholder workshop), culminating in a top 10 list of research priorities for blood donation and blood transfusion.

Results:
We will present the results of the PSP initiative, from the 761 uncertainties generated by the initial survey, the 56 indicative questions that arose by collating the survey responses through to the final top 10 research priorities determined at the multi-stakeholder final workshop. We will provide a breakdown of the priorities between patients, relatives, donors and clinicians.

Conclusions:
The final workshop was a rigorous, open process, which reached conclusions that all participants supported. These prioritised treatment uncertainties are a valuable resource for researchers and funding bodies and the impact of the PSP will be closely monitored. While a strength of this PSP was the broad range of medical conditions represented, the lack of a single 'transfusion medicine community' made seeking involvement a specific challenge.

Patient or healthcare consumer involvement:
Patients, blood donors and relatives/friends of those who have received a blood transfusion have been involved throughout this project as a core component of the PSP's steering group and providing 57% of survey responses and half of all workshop attendees; two have co-authored this abstract.

Relevance to patients and consumers: 

It is challenging to identify the most important treatment uncertainties in any clinical field and prioritise them for future research in that area. It is essential that patients and caregivers have a role in this process as well as clinicians. To achieve this, we established a Priority Setting Partnership (PSP) for Blood Donation and Blood Transfusion through the James Lind Alliance (JLA) in 2015 with equal numbers of patient and blood donor representatives and clinicians to ensure that consumers’ views were well represented.