collaboration, not manipulation

Collaboration, not manipulation

I left this year’s Patient Summit Europe feeling excited: there has been a critical shift amongst industry from words into all-important action. Rather than pharma talking about how patient-centric they are, inspiring work is now in progress.

Patient engagement is defined as “the effective and active collaboration of patient partners in the process and decision within the medicines lifecycle, along with other relevant stakeholders when appropriate”.[i] Lode Dewulf, Chief Patient Officer at Servier, reminded us that if we’re serious about collaborating with patients, then it’s all about letting go of control.

Here’s a top 5 round up of insights coming out of the conference…

1. R&D is leading the way

With regulators calling for patient-centricity, we heard about lots of patient-led clinical trial design projects. There is clearly an emphasis on making sure that trials measure patient reported outcomes that matter – being in work and taking the kids to school for instance – rather than adding extra days to a poor quality of life.

Sanofi Genzyme and detailed the #MakeWorkWork campaign, where the aim is to make being in work with MS a clinical outcome.

Novo Nordisk explained how they had collaborated with patients in their “two-way street” Disease Experience Expert Panels (DEEP) and listened first to the change that patients want to see in an ongoing obesity trial.

2. True collaboration starts from within

There were a number of talks on the types of activities taking place internally to improve patient-centricity. One company leading the way here is Janssen. They have investigated just how patient-centric they are and collaborated with patients to set up a Patient Advisory Committee (PAC) that any Janssen team can go to for advice and input on projects. Kes Grant who sits on the PAC said, “patients are not a problem to be solved, but a reason for the industry to exist.”

3. The wider community can help tackle the biggest issues

With vaccine hesitancy now in WHO’s top 10 threats to global health[ii], we heard about a very important collaboration on day two. GSK vaccines gained insights via a double-blinded online community to understand why people still avoid vaccinations and how more trusted sources of information can be provided.

4. Pharma to pharma collaboration can’t be forgotten

And the call for collaboration doesn’t just stop with pharma and patients. One key discussion was that pharma also need to collaborate with each other to better patient outcomes and increase credibility. If they don’t, the message was loud and clear from movements like #whywearenotwaiting where patients are taking innovation into their own hands.

5. Measuring impact proves real change

The common thread running through all these great projects was a clear idea of how to measure progress and prove how collaboration can make a difference. Something that is close to our heart with Aurora’s Acumen measurement framework.

So, while it may never be realistic for pharma to fully let go of control, there are tangible, meaningful projects leading the way, where patients are being treated as genuine partners. Exactly as it should be, and exactly what we strive for.

At Aurora, we help our clients put people with health conditions at the centre of their work from beginning to end. We do so because their expertise and perspectives play an important role in enabling wider patient access to innovative medicines and care. Get in touch if you’d like to hear more!

[i] Lidewij et al., for PARADIGM, Health Expectations (Wiley). 2019; 00:1-14


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