The James Lind Alliance (JLA) brings together patients, carers and health and social care professionals in Priority Setting
Partnerships (PSPs) to agree what research matters most in given disease areas.
The Bipolar Priority Setting Partnership began last year to identify unanswered questions about bipolar - its causes, diagnosis, treatment, care and prognosis – more information about bipolar is available on the PSP website at http://www.ouh.nhs.uk/bipolar . New technologies and approaches to understanding bipolar are becoming increasingly available, expanding the scope of research and making it more important than ever that future research is guided by people with personal or professional experience of bipolar.
The direction of research is often set by researchers or by the drug industry. We want to enable patients, carers, family members and the health and social care professionals involved in the care of those with bipolar to have their say, so that future research is aligned with what matters to everyone whose life is affected by bipolar. So, from October to December
2014 we ran an online survey to ask what questions those affected think researchers should be working on.
We were delighted to receive a huge number of responses with more than 14,000 questions submitted by over 3,500 people when we closed the survey in December. We have now employed a Data Manager who is reviewing the questions to identify key research topics, and all the questions have been grouped into 8 categories using a coding system known as the Health Research Classification System.
The questions are now being reviewed for a second time and grouped into smaller sub-sets, where they are identical or very similar, and are being re-phrased into “researchable questions” to enable research funders to use them to influence their funding decisions. When this has been completed, a sample from each of the 8 main categories will be checked by members of the Steering Group to make sure that the “researchable questions” accurately reflect the questions included within them. We will then look at all the questions again, and agree a strategy for an interim prioritisation process and for checking the existing research to see what questions have actually already been answered. When we have done all this, we hope to have a "longlist" of around 100 questions which will need to be voted on by patients, carers, family members and health and social care professionals. After this we will have a “Top 30” which will go to a final workshop in order to agree the “Top Ten” priorities for future research in bipolar.
We had hoped to invite people to take part in the interim process during the late summer of 2015. However, this now looks more likely to be in the autumn, with the final workshop in spring 2016.
We would like to say a big thank you to everyone who has participated so far, and are sorry that we cannot reply directly to those of you who asked us to. However, if you have questions about your own condition and would like to speak to someone do please contact Bipolar UK ( http://www.bipolaruk.org.uk/ ) by e-mail info@bipolaruk.org.uk
or by phone 020
7931 6480.
With very best wishes,
The Bipolar Priority Setting Partnership Steering Group Contact details:
Sandra Regan – James Lind Alliance Project Manager
NIHR Oxford Biomedical Research Centre
Churchill Hospital | Joint Research Office |Block 60 | Headington |
Oxford OX3 7LE
Tel: (01865) 223298 | E-mail: sandra.regan@ouh.nhs.uk
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Supporting partners:
Bipolar UK ; SANE ; Service User Research Enterprise (SURE) ; Oxford Health NHS Foundation Trust ; British Association for Counselling & Psychotherapy ;
Royal College of Nursing ; University of Oxford Department of Psychiatry ; Cochrane Collaboration Depression, Anxiety and Neurosis Group ; The British
Association for Psychopharmacology