“Why not to have Patient Research Ambassadors or Champions based in hospitals or prominent in online fora?” – says patient advocate Richard Stephens.
What do you see as the biggest challenge in patient recruitment and retention nowadays?
I see two challenges. The first is that we are not yet approaching enough patients. In the UK we have 300,000 newly diagnosed patients every year in our National Health Service. Roughly 35% of all cancer patients participate in some form of research, and 23% join clinical studies, all of which is very good. Yet, we aren’t approaching nearly two-thirds of patients to ask if they wish to participate in trials or tissue donation. We have very high acceptance rates when we do ask (66% for trials), but too often we aren’t asking.
The next challenge is broader, and it is all about trust. We, patients, need to know we can trust the systems; that all studies will be published openly, that our data and tissue is held securely and used anonymised, and that our samples are being put to good use for ethically approved research and not mad scientists playing with their test tubes and petri dishes. And we don’t mind if industry makes a fair profit – but we do not expect companies to rip off health systems when it is our fellow patients somewhere who have contributed to the testing of the products.
Which recruitment strategies do you consider as the most effective?
It depends on circumstance and culture. In the UK, we have our national health service, and the best recruitment strategy for studies in acute conditions will always involve the treating clinicians or our nurses. But for chronic conditions, the recommendations of patient groups often carry as much weight – the influence of one’s peers is always powerful. But I think in the end it does depend on the disease or the condition, on the study methodology (just how many biopsies do you really need?), and on the health system. After all, wherever we are, we enter trials because we are ill, not because we have a burning desire to boost the share value of Pharma plc, but we do want access to what we think are the best medicines available to us. In the UK and elsewhere in Europe too, the most effective recruitment strategies are often those that have had patients helping to design them. And in my experience, that’s even better applies in retention strategies, especially where retention may be a known challenge.
Lastly, if you are trying to improve patient engagement with the industry, please accept that it will take time, and for every three steps forwards, there may be as well two steps backwards – or at least sideways!
How to improve patient and site engagement?
Make it easy for people to join and to stay in studies; emphasise the advantages of being in a study – the Cancer Patient Experience Survey in England shows that cancer patients participating in trials report higher levels of satisfaction with their overall care. Get patient groups on board – they can publicise both the study itself and the benefits of research in general; again, it is the peer information that helps reinforce other trusted sources (where they exist). As for the sites, that is a bit harder. But why not to have Patient Research Ambassadors or Champions based in hospitals or prominent in online fora? We are trying it in the UK, along with the NIHR acting a broker between industry and patient groups.
In the end, what we need to do is to create a culture where taking part in research is a routine part of the patient experience; not just trials and studies, but data and real-world evidence, all in a spirit of genuine collaboration. Let’s make the world better and make a better world too. There’s a challenge!
Richard Stephens is a survivor of two cancers, a heart emergency, and continued co-morbidities and late effects. He has participated in four interventional studies and nine others.
Richard was the patient representative who co-authored the (English) Cancer Strategy 2015-2020, was a founder member of the AllTrials campaign and useMYdata movement, and is co-Editor-in-Chief of the Journal of Research Involvement and Engagement. He has worked with industry (AstraZeneca, Pfizer, Norgene et al) and with patient groups in Canada and Europe.
A veteran of 19 years as a patient advocate, Richard latterly Chaired the NCRI’s Consumer Forum and now Chairs BBMRI-ERIC’s Stakeholder Forum. He sits on strategic groups for Genomics England, Cancer Research UK, NHS England, NIHR NDC-HSC, PHE-NCRAS, CQC, MRC CTU, EHIC, ECOS, and the ABPI. In his spare time he is learning to speak acronym.