Last week we had a meeting in Leeds of patients, carers and service users from across the National Institute for Health Research.
As part of the event I wrote the following letter of how in the past year we have already seen some significant developments in patient participation, involvement and engagement in research. So this seemed a good opportunity for a quick update!
Back in January, the NIHR Clinical Research Network published the results of its “mystery shopper” initiative – where patient research activists revealed how well local hospitals were promoting clinical research opportunities. The report on this initiative went all the way up to Ministerial level and many NHS Trusts are starting to do more to promote research as a direct result of the findings. A real case of “patient power” driving changes.
On International Clinical Trials Day in May, the NIHR launched “It’s OK to Ask” – a campaign to encourage patients to ask their doctors and consultants about local clinical research opportunities, and help the clinical audience to answer these questions. NHS Trusts across the country held events to promote clinical research and thousands of leaflets were distributed, helping to raise awareness of the important role research plays in improving treatments for patients, and the need to treat patients as partners in research. The campaign got some great local media coverage, and was also a hit on social media, with around 500 tweets using the campaign hashtag. One exciting feature of the campaign was the way that patients got directly involved as local ambassadors, press spokespeople and social media supporters. Thank you to everyone who took part in this way – you really helped the campaign to make its mark.
Many of you will remember the work we did together on “The Way Forward” report back in 2010. This set out an ambition for the NIHR Clinical Research Network to move towards a phase “where the involvement of patients, carers and the public becomes more focused on improving research and its delivery, and leads to impacts that relate directly to Network responsibilities for delivering research relevant to NHS patients…”
With that in mind, I am sure you will be very interested in the NIHR Clinical Research Network’s Transition Programme. Through this Programme, the Network will be moving to a clearer structure with 15 Local Clinical Research Networks, each supporting clinical research delivery across all disease areas. A new contract is being drafted, which will set out the responsibilities for these local Networks, and you will be pleased to know that patient and public involvement and engagement features more strongly in these responsibilities than it has before. In fact, the Transition Programme offers great potential for patients, carers and service users to become even more engaged on activities relating to research delivery.
It is also heartening that PPIE has being “built in” to the Transition Programme at all levels. I am part of the overall Transition Programme Board, and Karen Inns is leading a piece of work to shape PPIE in the new structure. Each Network PPIE lead is linked into one of the various working groups for the Transition, so have a fantastic opportunity to make sure that the patient agenda is part of every decision, and that patient views shape these important changes.
This is only a short snapshot, but I am sure that when we meet at our event in June, we will hear of many more inspiring initiatives led by/involving our patient, carer and service-user community – and think up many new ways to continue to build our community and strengthen our voice.
I look forward to working with you again in June and for those using Twitter - #WITR
RESOURCES AND LINKS
If you’re interested in some of the things I mentioned in my letter, you may want to check out these web links, where you can find more information.
I have also added a few additional links in too that relate to the patient participation, involvement and engagement agenda more generally:
Based on the work of patient “mystery shoppers”, this report shows that NHS Trusts could do more to promote clinical research opportunities to patients. It also contains some useful statistics about patient attitudes towards clinical research.
Still related to the mystery shopper, this page links to the questionnaire that patients used, and to a useful leaflet called “We do clinical research” which lists the various patient-facing NIHR leaflets about clinical research. It is aimed at Trusts and professionals who recruit patients into trials, but may also be of interest to anyone involved in the research agenda.
OK to Ask
This is the homepage for the campaign website.
A good fun page with pictures of patients, researchers, NHS professionals and many others who sent in a picture to show their support for giving patients a stronger voice through the OK to Ask campaign.
This is the page on the NIHR Clinical Research Network that provides basic information about the Transition Programme.
It also contains an email address that you can use if you have any specific questions about the Programme.