Patient warriors – crying out for meaningful engagement with pharma

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Matt Eagles is a patient advisor and friend of Havas Lynx. We have been working with Matt on our patient engagement strategy on a number of projects. Matt shares our ambition to drive better outcomes for patients, is inspiring to work with and incredibly passionate about patient engagement. We invited Matt to attend the 13th annual EyeForPharma event with us. Matt’s enthusiasm and reaction to the pharma industry event was fascinating. We asked Matt to write a blog about his experience. It’s a really good read, so go and make a brew, get yourself comfortable and enjoy reading his blog about the event…

The 13th annual EyeforPharma patient summit Europe 2016 took place at Victoria Park Plaza on October 17th-18th 2016. Not being from the pharma industry myself, it wasn’t an event I was familiar with, however when it was explained that it’s a pharma industry event that focuses on the importance of patient centricity, it’s something I was keen to explore more. Patient centricity is something I and my friends at Havas Lynx hold dear. We believe in true patient centricity, not just as a buzz word, but as in genuinely ‘partnering with the patients’, getting under their skin and understanding what it is that will improve their situations and outcomes. If you are interested, Havas Lynx have written a white paper about it: ‘Smiles that Save Lives’. I highly recommend reading it.

Anyway, after working with Havas Lynx on a few projects recently, the team kindly invited me to attend the EyeForPharma with them. I jumped at the chance and I’m very glad I did. In this blog, I will do my best to share the insights I gained from the inspiring event…

Unusually for a blog I am going to begin at the end with the last speaker on Day Two. Kiri Fatania-Morley was recommended as a speaker of note to Katja Rindell of AstraZeneca by Andrew Schorr, founder of the patient power community. Kiri left both myself and Havas Lynx Interactive Director Adam Emmott and the rest of the audience present, soul searching and emotionally drained. In the whole process of patient outcomes, patient centricity and patient engagement, Kiri calmly and succinctly nailed all that is intrinsically wrong with the way pharma currently engages with patients. At the same time however, she validated their methods in her own mind, recognising their rights, methodology and protocol however unbalanced they seemed to her. Kiri is a patient living with terminal cancer, wondering if she will actually wake up the next day or if she would still be battling the horrendous side effects caused by adherence to a strict drug regime. Kiri referred to herself as a ‘patient warrior’ and that she most certainly is. Whether she will ultimately be able to survive long enough to see her ultimate goal of a new treatment remains to be seen, personally I doubt it and sadly from the emotion and wavering in her voice, I felt she did too.

Remarkably her role as a speaker at the conference had only been proffered a few days earlier when she was introduced to Katja Rudell, a Psychologist and Director of Patient Reported Outcomes at AstraZeneca, by Andrew Schorr of the Patient Power (@patientpower) group. Despite her late addition to the agenda, her presentation will live long in the memory of those who heard it and will resonate with everyone, either consciously or unconsciously. It will undoubtedly lead to a much needed rethink in patient engagement.

Her presentation questioned the whole nature and meaning of patient centricity and patient engagement. Understandably, pharma’s view in general was very different to hers as a patient with terminal cancer. However, it was shocking to hear her brutal view of the pharma industry. In her experience, it seemed that pharma’s main objective was to transfer raw data from the patients into increased sales. An objective that is a world away from her simple desire to stay alive for one more day. The fact that the two ambitions are so far apart from one another in their reasons for patient engagement was not surprising, and yet it was the patient who was first to recognise the need for meaningful dialogue sooner or later. The ‘warrior’, who even in her daily fight against some of the most unpleasant side effects caused by her medication, was determined to look for solutions and engage with the very company who manufactured it. Her bravery made me think why not just do away with the whole minefield of legal protocol that engulfs every aspect of interactions with pharma. This is from my heart but logically I know it’s only a pipe dream and sweeping changes such as these just aren’t practical and can, for patient safety, never happen. At the end of the day, people will die as a result of bureaucracy and red tape and it’s shameful. However, and much more realistically, it emphasised more than ever the need for both sides to come together and engage in meaningful dialogue. There is definitely light at the end of the tunnel, it just needs to be generated by the science and emotion engendered by presentations like Kiri’s: content we can all understand.

The whole patient summit experience itself was invaluable, and I will try to share with you the insights I gained in this blog. The event was an opportunity for attendees to question the standard processes, and it was great to see so many questions from the patients or PHD students studying patient centricity and patient engagement. Personally, I’m a firm believer that if you do not question the status quo then nothing will change and situations will not improve.

Day one was chaired by Jim O’Donoghue, Vice President of S3 Connected Health – it’s a tough job chairing an event where there are multiple speakers limited by time, but in general O’Donoghue marshalled the assembled troops well. He began by talking about patient centricity and patient care and what these terms mean to pharma and patients:

  1. Pharma need to better understand the needs of patients
  2. They need to work in partnership with patients
  3. They need to support patient treatment
  4. They need to support the whole condition
  5. They need to support the whole person

As a result of these actions patients will be:

  1. Understood
  2. Engaged
  3. Supported
  4. Empowered
  5. Have better outcomes

With these steps and actions displayed in such a straightforward manner, the indications suggest to many that it would be a simple task to implement. The sad reality is that communications between the two parties are played out on different levels and with widely differing motives which creates real tension and trust issues. A concept addressed by Ruth Watson from TEVA.

One of the biggest battles pharma face in engaging patients is gaining trust and respect. Without trust and respect, you cannot develop any kind of meaningful dialogue, make the public believe it, live and breathe it and make sure they are not just ‘words in a room’. Part and parcel of the trust and respect issues is ‘Does pharma listen to understand or to reply?’ If the answer is the latter then the conversation is very much one way;  if, on the other hand, they do listen then this will lay foundations for medicines to be developed ‘hand in hand’ with patients and their families.

James Fitzpatrick and Barbara Donaldson from Janssen spoke about their ‘open house days’ where pharma can help patient groups understand exactly what they can bring to the table whilst talking in an open transparent language they all understand. This is an excellent way of engaging patients in theory, providing the whole itinerary / agenda isn’t dictated to by one side alone. Otherwise, it is in danger of becoming a box-ticking exercise for the pharma companies without providing the desired outcomes for patients.

Kristian Hart Hansen, CEO from Leo Innovation Lab in Copenhagen, emphasised the need to not just deal with the condition, but with the patient as a whole to improve patient outcomes. Their rather innovative approach to use specialist anthropologists, not linked to specific pharma products to interview patients and  find out what makes them tick, I rather liked. However, I did consider that this level of intimacy could be too intrusive for many who, at the end of the day, just want to feel better in themselves without telling their life story to a stranger.

One of the most memorable moments and stories which I feel was extremely poignant, came from Anita Osborn, the Clinical Services Director at Ashfield Clinical.

‘Make sure you are focusing on something patients find useful, don’t jump to conclusions about what they might be looking for.’

To illustrate the point, she used a story about a rare disease that resulted in dwarfism where the pharma companies were looking at a drug that would help those affected to grow taller. In actual fact, that wasn’t what the patients were looking for at all – they were quite happy to be small but they had more urgent concerns that needed addressing which affected their everyday lives. A similar story was told by Rosamund Snow, the Patient Editor for the BMJ who spoke about a prostate cancer paper where the data was primarily focused on mortality. However, in reality, there were other concerns which were somewhat more personal but nevertheless equally as important: i.e. Will this drug affect my ability to get an erection? To most outsiders death and cancer are intrinsically linked but knowing that they can be intimate with their partner might be just the outcome that enables a better quality of life. The clear message here is: engage with your patients on the right level and listen to what they want and need.

Day 2 Highlights

 ‘Don’t get stuck on an escalator waiting for other people, change the way we bring change’

This principle was beautifully illustrated by Pooja Merchant, Head of External Medical Affairs at Bayer in an amusing VT which showed two people going up an escalator, presumably on their way to inspire #HelpfulChange. All is going well until they become stranded as the escalator breaks down. Then they must wait until an engineer can come to their aid on another escalator to rekindle their momentum. Unfortunately his escalator also comes to an untimely stop and everyone is stranded.

What we learn from this scenario is ‘change the way we bring change.’ There are various ways we can begin this process internally to improve patient engagement.

Points to consider include:

  1. Build upon the strengths of your existing culture
  2. Recognise that everyone within your organisation is an ‘agent for change’
  3. Invite ANYBODY who is interested to join ‘Patient Insight and Engagement team’
  4. Remember change is a mindset not a process; think differently and change behaviours
  5. Use external crowdsourcing to widen your overall knowledge. This can then be shared via meetups, co-working and grants
  6. Use internal crowdsourcing – ‘Think big, start small, fail fast … change begins with you!’

I have already made reference to Rosamund Snow, Patient Editor of the BMJ earlier in this blog but the insights she provided in her role were fascinating. Having patients who are the experts in their own conditions acting as patient reviewers to go through medical papers submitted for publication to test the validity of the claims, is crucial to their whole idea of patient engagement. Not only does it give the paper validity, it also empowers the patients that approve it and enables patients to highlight whether or not the paper is aimed at the right level. The example she gave, which I have mentioned earlier (about prostate cancer and the fact that it focused on mortality instead of the ability to get an erection) is so simple and so obvious to many, you have to wonder why it was ever overlooked. It is applicable right across the spectrum of patient engagement. If you listen to patients and find out what is important to them, find out what will make their everyday lives more bearable then you will ultimately improve their outcomes. Second guessing what patients want is not the answer.

Moving on from this, the whole issue of medical and pharma jargon was highlighted. It was concluded that having ‘lay-summaries’ of research papers would be an acceptable way forward to enable future dialogue and not exclude patients from the education process.

One of the most powerful ways of telling a patient’s story and enabling them to engage is to let them record video diaries over a period of time using go-pro cameras. This gives HCPs a longitudinal view of what it is like living with a chronic condition, rather than getting a snapshot of data from an app, so said Chris Jackson, a Director at C-Space and Dr Susanne Weissbaecker, Head of Trade and Patient Services at Takeda. Videos can produce amazing insights and generate huge amounts of valuable data. They are popular with patients and HCPs alike .

Flora Raffai from Findacure and Lizzie Perdeaux from Oxford PharmaGenesis Ltd discussed how making pharma more accessible via improving health literacy is crucial if you want to communicate in a language that everyone can understand. It begins with adherence and the dosage instructions on the sides of prescribed medications, which are often about as clear as mud even to the most well-educated patient. Why not, as Raffai suggested, give a printed schedule or a medical calendar, to each patient correlating times of the day when you take meds together with meal times so you can adjust your meds accordingly – in my opinion, it is a very simple and effective way of improving adherence from which both pharma and patients will benefit .

There are other steps too that pharma can take, says Raffai, to empower patient groups and keep them informed from the pharma’s own websites and printed literature.

  1. Provide a clear written explanation of how they propose to work with patients
  2. Have a clear CONTACT form to enable patients to ask questions
  3. Reply to emails (there is nothing worse in the age of digital not to provide an instant response, even if it is only to say your query is being dealt with and they will get back to you at a later date – there is no excuse!)
  4. Have a clear and transparent policy that makes patients aware of the boundaries

The crucial thing to consider in health literacy is just because you give someone a leaflet doesn’t mean they will understand it. A recent study showed that if you wish for up to 92% of your proposed market to understand your message, it should be written and aimed at 9-11 year olds. Quite extraordinary you may think, but it goes to show the diverse makeup of any population.

Katja Rudell, a Psychologist and Director of Patient Reported Outcomes at AstraZeneca presented the final presentation we attended, and it provided a fitting conclusion to a fascinating two days of conference. I shall end with her insights to help improve clinical outcomes:

  1. Diverse as the methods for engagement are, patients too are diverse themselves.
  2. Empowerment of patients does not mean manipulation of the patient to the benefit of pharma
  3. The final points are ultimately the most crucial to the whole idea of patient advocacy – patients want support NOT just to become data providers – they want to know things like:
  4. Will it help me reduce my symptoms?
  5. Will it allow me to do my job and enjoy my life?