They think it’s all over – it’s not yet! #IAmResearch #ICTD #ClinicalTrials

A few weeks ago I was walking down Euston Road in London and bumped into a friend who I respect and admire very much. They have been part of the public involvement movement for years. We chatted for a while and they worried loudly what was happening in ‘PPI.’  We parted on good terms as ever.

Just a few hundred yards further on I bumped into another friend from public involvement whose opinion matters to me. They were in celebratory mood and wanted to share all the great things that had been happening in their neck of the woods. We also parted on good terms – in fact it was hard to get away.

This is a true story and one I recounted in a talk entitled ‘Chipping Away’ at the recent Brian Turley Patient and Carer Involvement awards hosted by the North West London Collaboration for Leadership in Applied Health Research and Care (CLAHRC). The winners can be found here.

The fact is that both my friends are right. There are good things happening. And then there are not such good things happening. Sometimes I have sleepless nights about the latter.  I know that I could spend more time pondering the former.

For instance – since we are in awards mode – here are the winners of the NIHR Clinical Research Networks (NIHR CRN), McPin, MQ Transforming Mental Health, Service User and Carer Involvement Awards.  And the innovative winner of the BMJ Perioperative Medicine and Anaesthesia Award that I helped to judge. It just so happens that on that walk down Euston Road I was on my way to the first meeting of the UK PPI Standards ‘Test Beds.’ Here’s one of those pioneers.

I called my talk ‘Chipping Away’ because I genuinely believe that is a big part of how we make change happen. People reference the testimony of the late Dame Tessa Jowell or announcements such as David Cameron’s ‘Dementia Challenge’ as if they were sudden, seismic changes in the landscape.  But it is more truthful to say that they were a tipping point at which the efforts of many over years and years became too strong to hold back.

Earlier this year I noticed that there was some criticism of mental awareness campaigns. On one level, I agreed with the critics. There seems to be a steady flow of such campaigns in mental health and there is a risk that people are becoming confused or, worse, wearisome of the message. I also empathise with the view that it is concerning if such campaigns are about drumming up demand for services if the resources are not there to provide the right response. But i disagree totally and utterly that awareness campaigns do not have an impact. It might be difficult to show a cause and effect in terms of changing attitudes but I am convinced they play an important role if allowed to develop and grow over a long period. They are very much part of this ‘chipping away.’

Today is another case in point. It is International Clinical Trials Day.  The day when the NIHR leads the call for more people to take part in research with its #IAmResearch campaign (formerly called ‘OK to Ask).’ Many #IAmResearch events have already taken place up and down the country. Others such as the energetic and inspiring #WhyWeDoResearch movement did a fantastic round of Tweetchats all last week (see the figures in the visual below) with almost 1500 participants and over 18 million impressions.  This week the NIHR will be hoping for national and local media interest in its latest public attitudes survey. The events and activities will continue until July.

whywedoresearch figures 2018.jpg_large

How things have grown since that very first ‘OK to Ask’ campaign six years ago? Today’s #IAmResearch Thunderclap which ends at noon will reach well over 2 million people, that’s double what it was last year. Similar campaigns are cropping up in other countries including the United States and Australia  with plenty of events in other nations – Ireland, Norway, Canada to name just a few that I know of.  Each year there is more local and regional coverage (hugely underrated in its importance) of what is happening. But the best aspect is that people up and down the UK are taking the #IAMResearch campaign message and making it their own – whether it be information stands, open days, talks or cake stalls!

I AM RESEARCH

But if we think it’s all over, it’s not yet. The number of people in clinical trials is increasing but there is much more to be done to make research part of people’s care and treatment.  Over 80% of people do not know or think that the NHS does not offer opportunities to take part in research.  Each year gives us an opportunity to build awareness and flip those figures. At the very least to ensure there is better information out there for people. So please keep chipping away.

Thanks for your support.

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