Reflections on Pioneering Partnerships 2019
My key takeaways from the ABPI/AMRC/NIHR joint conference (more acronyms, anyone?!)
June 13, 2019 saw the third ‘Pioneering Partnerships’ conference hosted by the Association of the British Pharmaceutical Industry (ABPI), the Association of Medical Research Charities (AMRC) and, a new partner for this year, the National Institute of Health Research (NIHR).
The aim of the conference was “to inspire and inform the sector to better establish links with experts by experience to create a more inclusive and relevant research environment for patients and the public.”
The programme included short talks highlighting the importance of patients as active collaborators in research, as well as panel sessions, ‘fireside chats’ and table talks, giving attendees the opportunity to discuss and debate some of the key topics related to patient involvement and partnership in research.
Bringing the tagline ‘putting patients first’ to life
The thing that stood out most for me, and what set the conference apart from other similar events, was the fact that the people at the heart of the discussion — patients — were guiding the conversation from the get-go. The conference tagline ‘putting patients first’ was brought to life in the most literal sense.
The conference was hosted by Deborah James, who is living with stage 4 bowel cancer. This meant that the whole day was grounded and truly focused on putting patients first. After each talk and at the end of the sessions, Deborah’s reflections provided a valuable perspective, and her questions for panellists and speakers helped ensure that we remained focused on those at the heart of the discussions.
The opening keynote session was given by Wendy Mitchell, who was diagnosed with young-onset dementia at the age of 58. Wendy spoke passionately about the sense of purpose that being involved in research has given her. The feeling of making a difference. The feeling of empowerment. The feeling of hope.
She also discussed some of the frustrations she has experienced — when decisions have been taken out of her hands by overprotective healthcare professionals, and examples of tokenistic involvement where researchers have asked to ‘use her’, simply for her name and patient-status.
“Your expertise along with our expertise is a winning formula.” — Wendy Mitchell
Wendy highlighted that language really matters when it comes to research and involvement — something that Deborah also emphasised in her talk following on from Wendy’s. We need to use positive language which dispels the myths and demystifies research. And we need to use language that is inclusive and makes research accessible for all.
Deborah pointed out the work to be done to break down barriers when it comes to research. People have misconceptions about science and are scared of research, meaning that for some people research is only considered as a “last chance”, when other treatment options are not working. But as both Deborah and Wendy reiterated, research offers hope — this is a message we need to get better at communicating.
Deborah also spoke of the vital role patients play in research. “I am the data!”, she stressed, emphasising the importance of two-way feedback when it comes to research.
Are we still asking this question?!
I was delighted to receive an invitation to sit on the panel at the morning session, for a discussion entitled “Does patient involvement make a difference?”. Although my initial reaction to seeing this question was to roll my eyes — surely the answer to the question is obvious by now?! — I recognise that this is still a valid question to ask. Of course, those of us within the PPI community would respond with a resounding “YES!” — as Sheuli pointed out, patient involvement in research is essential. But the problem is our community is still not reaching everyone.
The panel suggested that part of the reason for this is because there is a lack of adequate structure in place across institutions and within organisations to support involvement. Research involvement needs to be embedded into policy, and there need to be processes, resources and funding in place to enable involvement to thrive.
But in getting to this point, we need to make sure we don’t focus on trying to ‘prove’ why involvement is important — our focus should be on ‘improving’, Simon reminded us.
We also spoke about the importance of involving people at an early stage in the research process, and ensuring that the right questions are asked.
“Apple wouldn’t develop its new iPhone without consulting its future users, so why should medical research be any different?” — Berkeley Phillips, Pfizer
And it’s important that these questions are asked to a representative group of people. Mohini Samani spoke about the importance of involving children and young people in research, pointing out that the experience of a 5-year old is very different from that of an 18-year old.
“You can’t just involve ‘a’ patient. You need to involve patients.” — Mohini Samani
Integrity in leadership
For me, one of the standout presentations of the day was given by Jon Spiers, CEO of Autistica. Jon spoke openly and honestly about the challenges the charity faced when presented with the opportunity of joining a multi-partner research project involving industry.
The charity believed that being part of the project will have significant benefits for autistic people, but they also knew that there are people within their community who are strongly against partnering with pharmaceutical companies. They also only had a few days to make a decision about whether or not they would be involved, meaning they didn’t have time to consult with the autistic community in the way they usually would.
They took the decision to be involved in the project — but they made sure this was on their terms.
“Lay out your conditions of involvement and be prepared to walk away. Do the right thing, not the easy thing.” — Jon Spiers, Autistica
Jon emphasised the importance of being transparent and honest with the autistic community in explaining their decision-making, and being open to dialogue. His presentation was hugely inspiring, and emphasised the role of patient organisations in prioritising the needs and wants of their communities.
What might progress look like in the next year?
Simon Denegri (NIHR), Aisling Burnand (AMRC) and Mike Thompson (ABPI) closed the conference by sharing their reflections on the day and aspirations for the coming year.
Simon asked everyone attending to “tell at least one person about this conference and the importance of involvement”, highlighting the need for good communication when it comes to involvement.
Aisling spoke about a “new era of collaboration”, emphasising that this must have patients at the heart of it, and that they must be involved meaningfully.
“What use is research if it doesn’t benefit patients?” — Aisling Burnand
In keeping with last year, Mike Thompson made a number of pledges for the coming year, including the commitment to work with the MHRA (the Medicines and Healthcare products Regulatory Agency) to clarify guidelines for industry when it comes to patient involvement.
He also highlighted that, despite many great case studies and examples of patient involvement within industry, learning is not being adopted. This is a problem, and is something we need to change.
Summary
There was so much to take away from the conference — much more than I have captured in this blog post. I came away from the event feeling proud of the great patient involvement work happening in the UK. At the same time, there was recognition from all in the room that there is still lots more to be done before patient involvement is truly embedded in the research process. There was a real energy to the conversations though, and I am sure I was not the only one who left feeling inspired and motivated to help continue improving work in this field, and ensuring that patients really are put first when it comes to research.
Some useful resources:
- ABPI sourcebook for industry — developed to support pharmaceutical companies to work successfully with patients and patient organisations
- National Standards for Public Involvement in Research — aimed at improving the quality and consistency of public involvement in research
- PFMD Patient Engagement Quality Guidance — a practical guide to planning, developing and assessing the quality of patient involvement
…and look out for the Charities Research Involvement Group guidance for charities supporting PPI in industry-led research, which is due to be published in the autumn. If you would like to receive a copy by email once published, please let me know (nratcliffe@parkinsons.org.uk).
