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I’ve attended more or less the full mix of patient-focused conferences and meetings in the last 18 months, and so was in two minds about whether to take another day away from the office to participate in the ABPI/AMRC inaugural Patients First conference in London, UK at the end of last year.

However, I was prompted to register after being intrigued by the speaker list, which included not just pharma companies and service providers but representatives from many different advocacy groups, as well as from government and various industry bodies. It was this speaker mix that made the event a really worthwhile day.

Putting patients first – literally!

True to its name, the ABPI and AMRC really did put patients first with this meeting, both literally and figuratively, with a patient taking to the podium as the first speaker. That really ought to be a no-brainer, but all too often, patient speakers are pushed to later slots and it can often be several hours before we hear from an actual patient at patient meetings.

Jane Taylor, Head of Patient Insights at Arthritis Research UK, has rheumatoid arthritis, and provided us with an instant reminder that even for people who have the benefit of education, motivation, and a public health service, accessing the right care to get to the outcomes you’re looking for, can be like trying to navigate a snakes and ladders board.

Her observation that people with multiple conditions are often treated as several fragmented conditions, rather than as one whole person, was a good illustration of how far we still have to go before our services will really be centered on patient need.

Jane was followed by Nicola Blackwood, MP and Undersecretary of State for Public Health & Innovation, who spoke about the tremendous pressure being put on health services by the ageing population and in particular the rise in dementia, focusing on the part that patients and communities can play in innovating to help address the myriad of challenges we face.

How do patients think we should involve them in research?

This then led into the first panel discussion of the day with the patient group and pharma industry representatives discussing the need to involve patients in research and development within the industry. The patient panel members all agreed that there was a real need for new treatments in a range of diseases, and that the benefits for individual patients in collaborating with industry on the development of new drugs were varied and far-reaching.

Paul Gill, who has dementia, put it succinctly when he commented, “I just don’t know why people wouldn’t”. However, we know that there are many barriers to participation in clinical studies for lots of patients, and as an industry we should continue to address those and facilitate access to the best medicines for all people living with ill health.

The panel had some suggestions for how industry could do this, including:

  • Understand the different patient types and the different ways they could contribute to research
  • Involve patients more, and earlier; they can do more than review your Informed Consent documentation
  • Seek to understand the full patient experience before proposing solutions.

Paul Robinson from MSD captured the latter point above when he said that, “A wise colleague in discovery recently said to me ‘start with what’s bothering the patient and work backwards – then look at the biology and work forwards’. If you do it the other way round, you are likely to discover a rhubarb receptor blocker, or something equally obscure, and then have to work out what to do with it”.

Roger Wilson, a sarcoma patient and founder of Sarcoma UK, urged us all to keep our focus on real patient needs in a different way, saying that, “Everybody should have a lay explanation of what they do and why, and keep it up to date”. A good reminder that it is easy to lose focus on the patient as we focus on getting through our daily work.

One real gap identified in this session was the ability to keep the focus on the patient all the way through regulatory processes; the panel highlighted the frequent lack of alignment of priorities between clinician, pharma, regulatory bodies and patients.

Nick Robinson from the BBC then spoke very candidly about his experience as a patient, reminding us of the importance of effective and open communication in the healthcare setting, saying “People can cope with uncertainty, but not with there being information that is not being shared”. Nick was followed by the second panel discussion featuring representatives from the MHRA, Almirall and the National Cancer Research Institute (NCRI), among others.

Richard Stephens, patient representative at the NCRI, captured the importance of really understanding patient value by saying, “I am more than any intervention. There is the quality of my life that I measure every morning, and I define what that is”.

What changes are needed?

In the final panel discussion of the day, Sue Hill from NHS England summed up the five areas she sees as the key changes for healthcare over the coming years:

  1. Technology
  2. Explosion in range of diagnostic tests
  3. Range of interventions to meet the growing desire for personalised medicine
  4. Data and the power of this in understanding health decisions
  5. Patient and public participation in healthcare.

Aisling Burnand, Chief Executive of AMRC, expressed her thoughts as the day closed, “By pooling resources and expertise, and by working innovatively and collaboratively, the medical research sector can step out of the current health and economic shadows and embrace the extremely bright and positive outlook for medical research in the UK. Now more than ever, we must realise the potential for our medical research sector to lead the way in patient-centred research that delivers the outcomes patients deserve. It is my hope that the conference is just the start of a conversation, and proves the impetus needed for much more cross-sector collaboration in medical research going forward.”

Where was the added value?

For me, what was different about the Patients First conference was the mix of speakers and panel members and the use of different formats to deliver the best value insights from the many experts participating on the day. Having a really broad mix of pharma companies, patient groups, individual patients, healthcare professionals, payers and policy makers, meant that this conference felt the most practical and tangible I have attended all year.

This meeting was not about working in an ideal world, but in the real world, and the value was the greater for it.

If you require any support with your patient engagement activities, please do not hesitate to get in touch with Jo Fearnhead-Wymbs, our Patient Engagement Director, via

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