On Wednesday 5th of December nitro ran our first physical event, ‘the future patient’ in the Soho Hotel, London, and what better way to kick off our collaborative discussion series – and our commitment to helping design the solutions for better outcomes through collaboration- than with a representative range of expert opinions to help us ‘bridge the gap to healthier lives’?

We were joined for the morning by a range of eager participants in the audience who all have a part to play in the pharma/patient/healthcare ecosystem of some sort. The representation from across the spectrum of pharma and the engaging conversations that was had only demonstrated the desire and passion for many in the industry to make real change in this space, which was both encouraging and inspiring to our mission that we at nitro want to help charge.

For the discussion, we had Emma Lawton, an amazing and talented author, speaker and Parkinson’s patient, Dr. Ross Walton, scientist and entrepreneur, Kevin Michaels-Kim, a ‘refugee of pharma’ turned patient and tech entrepreneur, and the Patient Experience Director from Pfizer Oncology in the U.K., Geoff Rollason to tackle the key pillars of the patient, technology, and getting pharma involved in helping the whole ‘human’.

The keynote was delivered by Emma, who was diagnosed with Parkinson’s disease at the age of 29. Now at 36, she shared her experience of the condition, living life, of how digital has helped her and others, her experience of working with pharma, and some recommendations for them (see below).

Emma, in her own words, during her keynote, said that she, “is not a typical Parkinson’s patient as she still has high levels of serotonin” and in spite of her self explained ‘dodgy’ neck that has for months now resolutely refused to hold her head up (for so far, mysterious reasons) her passion and love for life shone through.  This is the second time I have seen Emma (now a veteran of TEDx, and even stand-up comedy), and it is remarkable to see and hear her talk. It may be a cliche to say so, but seeing such an inspirational young lady speak with passion and humour about her life with Parkinson’s really does put your own concerns into perspective.

We kicked off the morning’s proceedings by asking the (mostly pharma) audience who was producing patient resources currently, before moving on to two key questions around the level of patient involvement in them and leadership buy-in to the process. Whilst the majority of attendees were building patient resources, almost none were building resources with patients from the start, and leadership buy-in was conspicuously absent.

It was agreed that technology will undoubtedly help in new and amazing, and as yet unimagined ways. But what are the key problems or challenges for patients that were discussed?  What prevents, or at least slows down the ability of pharma to adopt a more patient-centred approach to producing the tools and services to really bring to life their shared patient-centricity aspiration?

Here are the key themes from the discussions as I saw them:

  • Lack of leadership buy-in for patient initiatives within commercially focused enterprises
  • Short-term commercially focused thinking.  Patient work gets slotted into yearly planning cycles, but meaningful solutions cannot be restricted to the fluctuating focus of yearly plans – patients deserve a long-term commitment
  • Stakeholder sentiment and trust – qualitative measures – are not considered sufficiently valid to focus on
  • Patient-centricity is just lip service if leadership do not have relevant patient KPIs
  • Limited experience of really involving patients. No frameworks, standard operating procedures, guardrails, or even cheat-sheets exist in patient engagement, an area that gives pharma palpitations.
  • The lack of appetite for risk whether engaging with patients or utilising social media to engage with the digital hcp leads, patient leads or the wider stakeholder universe. These are both problematic and fraught for the risk-averse.

We didn’t get to the bottom of all of these problems within the two hours that we had allotted to discuss them, but there were recommendations and suggestions that we’ll be releasing in the coming days and weeks in video content.  There was, of course, considerable food for further thought that we will be tackling in more detail with articles and future events, as we look to guide our partners through to a more patient-centred future, and deliver real outcomes with you.

Until then, I’ll leave you with Emma’s key tips for pharmaceutical companies looking to engage with patients in a more human way.  

1. Medication is a means to an end, it allows people to better be able to live the life that they want to live.  It’s not the be all and end all.

2. Patient-centricity means involving patients right at the start. Always. Not at the end as a token gesture when they can no longer influence the solution.

3. It should never be a box-ticking exercise. Creating patient assets, and even inviting them to test just prior to releasing them – when there is little ability to really affect them – is nothing more than a token gesture.

4. There needs to be clear moments throughout a project to check that what you are proposing is actually what people need – in other words, don’t involve patients and then cut them out of the communications. And be polite!

5. Ask questions, don’t assume that you know the people that you are catering for, and what they need to live their lives in the fullest way possible to them. They are human first and foremost.

6. Use their feedback (Emma got all “Parkinsy”, in her words, at this point and couldn’t recall this recommendation. Emma if you’re there help!)

7. Don’t always work with the same people, cast the net wide to get the widest possible patient input into problems that affect the group.

8. Keep your promises, be fair, and treat people with respect. People want to help.

9. Treat people as humans, not just the disease.

10. People talk, and social media allows this. If you engage with a patient you need to be respectful, patients are not waiting around for your call, they have lives to lead.  Realise that if you create a poor experience it will be shared, so taking the time to create a positive experience and taking the time to do this is more than a little worthwhile.

As we start to look ahead to 2019 the agency is convinced that better more holistic outcomes for patients will come through more effective collaboration between multiple parties, but in which pharma will play an incrementally increasing role as they embrace digital health and digital engagement more fully than ever before.

See our recap of the day here;