Global Patient and Public Involvement in Research

Sally facilitated the inaugural meeting of the International Patient and Public Involvement Network in late 2017, momentum is gathering with a plan to;

….create a social movement globally, changing the paradigm, content and nature of research, so that embedded collaboration between patients, clinicians and researchers focuses on answering key questions in ways that create the most benefit for patients. As Heraclitus stated, “big results require big ambitions.”

An update on progress and developments is here 

National Standards for Public Involvement

Since 2016 Crowe Associates have been working with a UK wide Partnership of representatives from the Chief Scientist Office (Scotland), Health and Care Research Wales, the Public Health Agency of Northern Ireland and the National Institute for Health and Research (England) to develop a set of standards and indicators for public involvement in research. These are currently being used by a diverse group of 10 research organisations and collaborations.

You can follow the conversation on Twitter by using the #PPIStandards hashtag!

What matters in early osteoarthritis of the hip and knee? A new James Lind Alliance partnership

JLA pictureA new James Lind Alliance Research Priority Setting Partnership has started and we invite people to take part.

Who can take part?

Patients, carers, and healthcare professionals.  If you have (or have had), or are caring for someone who has (or has had) early stage osteoarthritis (OA), or work as a health or social care professional with people who have (or have had) early stage OA….we want to hear from you. 

Why should I take the survey? 

This exciting initiative will be overseen by The James Lind Alliance, a non-profit making organisation funded by the National Institute for Health Research, ensuring the exercise produces an unbiased result, with equal weighting given to the views of the different participating groups. So whether your interest is personal or professional …your opinions will count.

How do I take part?

The survey is available at http://tiny.cc/3d71vx or contact the James Lind Alliance Project Manager at the Oxford Biomedical Research Centre to request a paper version (tel / voicemail 01865 223298, e-mail sandra.regan@ouh.nhs.uk).

Research Priorities for Hip and Knee Replacement

Every year, about 150,000 hip and knee replacements are done in the UK because of osteoarthritis.  But we still don’t know enough about which patients benefit most, when is the best time for surgery and how do we ensure that patients recover quickly and well?

James Lind Alliance

A James Lind Alliance Priority Setting Partnership gathered research uncertainties from a wide range of people with osteoarthritis and health professionals that treat and look after them.  There were prioritised using a James Lind Alliance approach and the results and process to achieve the Top Ten Research Priorities are detailed in this report.