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Travelling to conferences like the eyeforpharma Patient Summit Europe always involves a mixture of anticipation and readiness for disappointment. We are so keen to see the progress pharma is making towards a more patient-centric model, yet, having been to a few of these meetings in the last year, we are also prepared for the possibility that the conversation may not have moved on from why we really should be focusing on patients, to what are we actually doing and how are we doing it. This time, we should have had more faith!

What we saw, heard and participated in at this year’s Patient Summit in London on October 17 – 18 was a refreshing change of pace, with a whole range of tangible examples. The meeting highlighted how pharma companies are engaging with patients and reporting on the outcomes, not just in terms of what they had learned from the experience, but what impact that had on their business decisions, and how that in turn affected patient outcomes. Patients were very present at this meeting, on the panels and as delegates, and it was great to be able to hear their perspectives first-hand.

We’re getting over the hurdle of compliance (or at least, some companies are, in some areas!)
At last year’s Patient Summit Europe, there was a lot of nervousness, even resignation, about the legal and compliance challenges when engaging with patients in a meaningful way. However, great strides have been made across a host of companies in this area and clearer guidance from legal departments is helping teams to feel more comfortable about the rules of engagement. There is still real inconsistency in different territories though. Without a real move towards harmonization, there will continue to be confusion and misunderstanding about what we should and shouldn’t be doing.

Lode DeWulf from UCB captured this, tweeting…

“we urgently need harmonization of governments’ rules on patient engagement or we will delay access to innovation!”

But it can be done. This year we saw some real examples of where this is working well, and a few stories about the challenges. However, a key theme was around planning and forward thinking. If teams wish to embark on a new patient engagement initiative, then bring legal on board early in the process. Ask for support in enabling and empowering the team to develop a solution that meets their objectives and sits comfortably within the regulations – if we do this, we will get a much better outcome.

Paul Tunnah, CEO pharmaphorum, summarized the key take home message on this: “Advice for pharma: if you involve legal/purchasing early in your patient-led activities – totally different conversation”.

Coming soon to a team near you – what did we learn that was new!?

For us, while there were a lot of great takeaways from the Patient Summit, there were two clear standouts.

Patients included? We hope so! So does the British Medical Journal (BMJ) patient review panel.

The BMJ has appointed a patient review panel that they will consult with on all manuscript submissions and have amended their submission process accordingly. Rosamund Snow, Patient Editor, presented their approach, with the following key points:

  • For all manuscript submissions, the BMJ will ask if patients have been involved in the development of the protocol and interpretation of study results and in particular the endpoints, to ensure they are relevant to patients and not just reported by them in response to a questionnaire
  • All manuscripts will now be reviewed by patients as well as specialists in the indication and they will have comments that will need to be addressed.

Those of us who have worked in healthcare publications will know that the BMJ usually innovates and leads the way. It’s great to see patient perspectives woven into their process, highlighting that thinking around this area is important for everyone in our business. Time will tell how quickly other journals follow, but it was clear, this initiative created much discussion and people are genuinely interested in how this might make a difference.

When is a device not a device? CE marking for digital apps

Dr Ashley George, Global Head of Innovation and Consumerisation Centre of Excellence GSK, updated the audience on the current state of health apps – and the big news (which will be news to nobody) – is that there are a lot of them! Really a lot… about 165,000 on the App Store today and around 600 new ones added every two days. But are they all accurate, credible, useful or even safe? To help wrestle with this, the Medicines and Healthcare products Regulatory Agency (MHRA) has just released new guidance for developing “Medical device stand-alone software including apps”, and for CE marking relevant apps as “medical devices”, available here.

The guidance helps clear up some ambiguity and includes:

  • Flowcharts to determine what software or apps should be CE marked or not
  • How to address the main aspects of CE marking.

Useful guidance for any teams considering developing healthcare-related digital apps.

Still no simple answer on measurement

In what is fast becoming the holy grail of patient-centricity, we saw companies demonstrating a range of ways to measure some of their individual patient-focused activities. But it was clear that most organisations are still grappling with the challenge of how to measure the overall impact of a patient-centred approach, particularly as the impact of some initiatives may not be truly seen for many years. This looks likely to remain a “watch this space” scenario, with nothing really new being discussed.

And more…

The Patient Summit highlighted some great examples from Bayer, Novo Nordisk, Janssen, Pfizer, Teva and Takeda, to name a few, and highly valuable input and comment from audience members from many different organisations: pharma, vendor, advocacy groups and patients themselves.

New this year was the patient panel which provided highly valuable insight and input on each session, holding us to account for what we were saying, bringing me neatly to…

Don’t just say you’re doing it – just do it!

A final word from patient speaker Malen Madsen who, following her many engagements with patients, reminds us that we can’t just say we’re doing this, we need to actually do it… “I check you out, I hold you accountable to see that you do as you claim”. So if we work with patient organisations, they will be looking us up, to be sure we are who we say we are and that we walk the walk.

If you are interested in knowing more about what we learned at the Patient Summit Europe, or any of the points raised, please get in touch.

Stephanie Tortell, SVP Group Medical Director, Head of Patient Centre of Excellence, Ashfield Healthcare Communications

Stephanie brings more than 25 years of industry and agency experience to her role at Ashfield, where her current focus is on supporting Ashfield’s Patient Centre of Excellence from both enhancing our external leadership and internal collaboration. You can contact Steph via stephanie.tortell@ashfieldhealthcare.com.

Jo Fearnhead-Wymbs, Patient Engagement Director, Ashfield Healthcare Communications

With a mixed background from medical communications and patient education and support, Jo’s focus is on building the Ashfield Patient Centre of Excellence, specialising in patient engagement activities, and working with clients and Ashfield teams to ensure that an understanding of patient needs is kept as a key focus. You can contact Jo via j.fearnhead-wymbs@ashfieldhealthcare.com.

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