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Patients themselves are the most qualified to determine whether the industry sees them as customers. They are more than their illnesses and lists of side effects, and they want to be treated that way.

What is the number one need for you as a patient advocate that companies fail to meet?

It is the same need that the healthcare system as a whole is struggling to meet, including regulators.  I am a person with a combination of challenges, not simply a list of diseases and/or drugs. I have my own views on what the quality of my life should be, my own views on what constitutes a good day and a bad day, and my own views about which side effects – and indeed which of my several health conditions – are the manageable ones and which are the debilitating ones.  And it is not only me that I think about. I have pills that make me go to the lavatory two or three times a night – there is only so much lost sleep my partner can cope with. I am supposed to wear surgical support stockings on my left leg – but I have a disabled right hand. Ever tried getting one of those on – or off – with only one good hand?

Is there something specific in your behaviour as a patient that has changed as a result of  the pandemic?

For me personally on a daily basis not much has changed, other than the obvious things like wearing a mask, social distancing, working from home etc. However my health care has changed – telephone consultations once I can get through to a GP (which is now nearly impossible), hospital appointments postponed several times and then finally arranged for somewhere several hours from my home because somebody has loaded a computer with the wrong algorithms and/or postcodes. My behaviours changed a long time ago. I now know to take my prescription list to every doctor I see and to be ready to explain my (several) conditions because even if they read their computer screens they still consider me as a collection of medical problems not as a whole person, and industry as a whole still does not see me as a customer or even an end-user, no matter how “patient-centric” they claim to be. (How can you be “patient-centric” if no patient would use that phrase?)

What would you recommend as the best way for companies to reach out to patients? Is there a specific channel use that is still missing?

I am not convinced about industry reaching out by itself, although I appreciate my view is very UK-based and UK-biased. Like most UK patients, I am always staggered by the amount of reaching out that industry can do elsewhere, e.g. TV adverts in Canada and the USA.

Globally though the public and patients too are much more aware of research, of trials, of data and graphs etc; all because of COVID-19 and what the world has endured – and achieved too. I would like to see industry capitalise on that. Reach out to patient groups and charities and feed them with good stories about how clinical trials (and the patients in them) have improved medicines and care. Tell them how useful data is – and reassure that no personally indentifiable info is used. Then the patient groups and advocates can share those stories, so it is not industry doing yet another marketing spiel, it is patient-to-patient good news.

Also, think twice about how you say things. As someone who has volunteered for several trials and studies, I am utterly fed up with industry banging on about the 30% of participants who do not complete the study – not only is that an insult to those people who do drop out (hey; our participation is voluntary, you know, and most of us do have lives to get on with) but more pragmatically, why don’t you thank the 70% of us who DO complete the study? Well done to all Captains of Industry who talk about their success and who THANK THE PATIENTS who helped deliver that success, whether by participating in a trial or donating tissue or contributing our data.

And if anyone is wanting me to talk about apps and wearables and PROs, well, yes, I could, and I have no doubt that they can all help. But what do we really mean when we talk about companies reaching out to patients? We all have a patient in our family or among our friends. Even industry people can also be patients! We all have lives to lead and people we love and very few of us define ourselves by our illness or our health condition. I am more than my molecules; my life is not just disease, drugs and devices. Patient centric? Just be human!

Richard STEPHENS is a patient advocate who has survived two cancers, a heart emergency, and continued co-morbidities and late effects. He has participated in four interventional studies and nine others (so far). In his two decades as a patient advocate, Richard has been involved in the design and/or delivery of over 30 clinical trials and studies, and has sat on many strategic groups in the UK and Europe. He works with patient groups and advocates globally and has led influential projects looking at links between research awareness/participation, and patient satisfaction with their overall care. An internationally recognised key opinion former, Richard is the founding co-editor of the Journal of Research Involvement and Engagement, chairs BBMRI-ERIC’s Stakeholder Forum (Europe’s biobanking infrastructure) and chaired the NCRI Consumer Forum 2012-2019. . He was a patient advisor to the UK Government during the early phases of the Covid 19 crisis, March-June 2020.


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