UCL Involvement Leads Network meeting

The meeting was very well attended, including, Jane Batchelor and patients Paul , Joan and myself from our team.

After light refreshments and the Introduction given by Erin Walker who is the Patient Insight and Involvement Lead at UCLPartners talks were given by the following speakers:

Natalie Fitzpatricks‘ “Patient leads in Genomics” talk was very interesting and highlighted for me the very many ethical and practical questions to be answered. I am a big fan of research done in genomics and can see exciting possibilities for the future. It certainly requires a lot of work to be put in on information disclosure because, apart from anything else, there will be patients like me who want as much information (and explanation) as possible and people who do not want any at all. There will obviously also be patients who fall between these opinions and all views are equally valid. For this reason I feel that patient input is not only desirable but essential. Ideally, my solution would be to give every patient the choice to decide what information he would like after discussion about the implications of being given this knowledge.

There is also the question of what Doctors themselves feel comfortable with in disclosing results to their patients. Indeed, whether they are sufficiently trained in understanding the results and all their implications themselves.

Hothan Esmael “National Standards for Public Involvement in Research” also gave an interesting and informative talk using accessible language about National Standards for Public Involvement Research. I am personally inexperienced in financial matters and things like putting in bids for funding but I do understand the need for standards and having a system to measure performance and improvement achievement. The difficulty I always have with these things is actually understanding what is required by some stated standards. What I like about these NIHR Standards is the acknowledgment that it is not a “one size fits all” set of rules but rather that the standards can be complied with in different ways by individual groups and institutions.

Katrina and Lilian Brooks.” Experience as a young person involved in Research” What can I say about this wonderful mother and daughter. They were brilliant! What stood out for me was how powerful and effective they were in presenting the story of a young person involved in research. I take my hat off to them. I must look at my own deficiencies and try to improve my own skills. 

It brought home to me something that David Collier has been saying to me for the last six years when I joined the CANTOS Study and probably long before that too.

He said that the patient’s story is so very powerful and that many of his colleagues in the profession hadn’t yet woken up to that fact yet. Well, this was an excellent example of how powerful the patient’s story can be and there is at least one more doctor who has realised this and used it to very good effect. I think Katrina and Lilian’s story was the perfect example of how valuable patients’ stories can be. 

Each of the talks included a question and answer session that was quite lively with pertinent questions being raised and answered effectively.

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