After a wonderful couple of days at Woodbrooke with playmates I was solo once more as I headed to London for the above conference – a very different kind of event.
The aim of the conference is:
“ to inspire and inform partners across the health research sector to better establish links with experts by experience to create a more inclusive and relevant research environment for patients, carers and the public…….. Patients have a crucial role in medical research, not only as participants but as active collaborators. From generating research questions and designing clinical trials, to participating in complex research studies and developing personalised interventions”
I was there as the Keynote speaker, a society ambassador and research network volunteer. The first part of the day, being sponsored by the Alzheimers Society, I was there to talk about my involvement in the research world and how the current world might be improved.
The trundle to London was fine and I made my way to County Hall on the banks of the Thames near the London eye. Heavy skies hung over the London Eye
My hotel was just across the Thames and a welcome silence welcomed me in my room. I’d noticed it was a strange shape room with the bathroom door on a corner instead of round a corner…..anyway, I went through my usual routine of settling in and eventually switched off the light…..
The unusual shape was to be my downfall as I got up to go to the loo in the night and forgot about the strange shaped room…….stumbled and whacked the side of my head on the corner of the wall…….🤕
When I got up the next morning, the event showed bright and clear on the side of my face…..will either have a black eye or a bruise down the side of my face 🙄
The venue was right next to the hotel and the man on reception made sure I turned the right way out of the door……
I was met by the organisers and shown into the event room, which was a sell out. I was so happy to meet the person who would be introducing me as I realised it was Deborah James (@bowelbabe) who has stage 4 bowel cancer and has the most amazing podcast “You, me and the Big C’, which is truly wonderful, uplifting and honest.
Had to have a selfie….
Deborah started the day with general housekeeping and encouraged everyone to log into SLIDO.com which allows delegates to ask questions during the day…….
She introduced me very kindly and I opened the day…….
I said many things including…..
“We are experts by experience. Your expertise alongside ours is a winning formula! But don’t unestimate the skill involved in arranging public involvement”.
Deborah was after me. She told us that before being known for living with cancer she was a Deputy Head and was a Research Lead for Education…..she is such a lovely smiley person and said how she so agreed with me about language and being valued.
Her passion for research didn’t stop when she got cancer. Patients know their bodies better than everyone else. Staggeringly it was only after going private that she got diagnosed as doctors put it down to IBS even though she was passing blood….☹️….She has two young children and after the initial shock she started talking about research but in a different environment ….she has an amazing ‘pooh’ outfit
Her reason for the outfit is to break down the barriers. She emphasised “LIVING’ with the disease. Her and her wonderful friend’s podcast changed their lives. One of the presenters, Rachel, died recently, and even that happening was talked about and mourned very publicly on the podcast.
As a patient you think that being on a research trial is your only option as other options have run out. But it’s not necessarily so. She wants hard evidence, not a vague theory. She also spoke of needing HOPE. She met the researcher who discovered the drug she’s now testing. But he found it 20 years ago so the process takes forever…………..some of the procedures keeping her alive were not around 5 years ago. Research is keeping her alive.
“It’s my Cancer, My Personalised Care, I am the data” – this will hopefully help others which also gives her hope. It’s knowing what’s right for each patient and putting ownership back in the hands of the patient.
The challenge is to use the right language, giving people information, giving them options to demystify research and more chance to enjoy life.
After Deborah there was a panel and the question was:
“Does patient involvement make a difference?”
The panel was made up from Parkinson’s UK, a patient, a medical director, ABPI (can’t remember what that means) and Simon Denegri from NIHR.
Mike said, ‘Would Apple research the next IPhone without involving people who would use it – medical research should be the same.’
It was good to hear one say how can we make the experience better. Deborah said how much easier it is to make the decision if we know the stats – what % of people who volunteer to take part are on the trial?
The questions from SLIDO.com were being fed through live on the screen behind.
Simon said how evaluating involvement shouldn’t be about ‘proving’ but ‘improving’. Changing the way things are done in research.
Deborah asked what are the biggest challenges to avoiding the tick box scenario. Mike from the pharma company, said how the change has to come from the top of the organisation. They have to see the value in the outcomes and now it’s mandatory in his company for people to be involved at the start.
Fascinating to hear the argument from the other side of the fence. Many questions from the audience. I couldn’t use SLIDO so couldn’t ask via that…
But I wanted to say how we’re all converts in the room, we all have a passion. How do we get to a more diverse access to people who don’t know anything. “We don’t know what we don’t know”. We’re in the minority. When you’re diagnosed with any condition you’re probably not even aware of the charities, the societies that exist to help. So how are we suppose to know the myriad of opportunities that exist in research. So we have to normalise talking about research at grass routes level – at clinic level, Gp level, community level.
During break lots of people came up to chat, from Northern Ireland, Australia and many many charities and lovely people, even Twitter pals, which is always a joy.
The man after the break from Birmingham University about tumours spoke so fast my brain couldn’t keep up with him. He also spoke in very technical clinical language, so really I didn’t have a chance…….so havn’t got much to feed back…..
Mark Briggs then spoke about Advanced Therapy in Wales and Cancer Services. We all know the Health care system is unsustainable. We need fundamental change, new techniques, new approaches. He spoke of the successes in cell and gene therapies. All the individuals on screen were terminal but around 40 % have now been given an extra life through research…..
So maybe if you see if you’ve inherited a certain gene it can be targeted to prevent future disease. The need for close partnerships involves education of everyone to make the right decision that suits them.
He gave a lovely quote:
“If KPI’s we’re measured in inches, we’d have lots of success , but sadly there are many written documents that are often unread.”
Much better speaker……
Jill Pearcey from ABPI (association of British Pharmaceutical Industry) was up next who’s talk was around the new publication Working with patients and patients organisations.
No one should need to be an expert in the industry to read a document that talks about public involvement. Clear language is so important. Payment issues are covered in this new document. The document covers 6 themes – Principles, Definitions, Events and meetings, Research & Development, Product launches and Payment. I liked the way Jill covered and stressed, “Explaining why’ something happens as it does. Because if people understand why, they are better informed and understand the process better. It’s published today on the ABPI web site.
Jon Spires from Autistica, the UK’s Autistic research charity, spoke next about their relationship with Industry. They’ve had a very strong involvement in partnership with the public. Again, language is important and he spoke about ‘autistic people’, not patients. Interesting that they never use ‘people with autism ‘……
There were then break out sessions and I was asked to be recorded for the Collaboration research taking place by the NIHR. They are hoping to capture lots of personal stories and the question asked went something like.
“What’s been the biggest impact from being involved with research?”
My response was that it was two fold. For me personally it had given me a sense of worth, value and purpose again. But also it enables the researchers to see the reality of their research; their research question may sound brilliant in theory, but if it won’t work in practice, what’s the value. It’s a two way process of knowledge sharing.
Always interesting to hear how other communities work, the issues they’ve found and the language that group prefer. Sadly I had to leave at lunch time to head for the final event of the week in Gerrards Cross.
What was abundantly clear was including ‘experts by experience’ no matter what the condition, is a winning solution when viewed as a partnership. I met some wonderful people with wonderful stories and listened to a myriad of different specialist researchers in different conditions. It was so nice that it wasn’t dementia focused as it meant I met new people related to different conditions and we all had one thing in common – that we want to make change happen…….fabulous…….