Stop being control freaks: pharma’s challenge in involving patients


Lode Dewulf, chief patient affairs officer at UCB, tells Paul Tunnah how patient-centricity is evolving, and describes how pharma still needs to adapt.

There is an increasing realisation within healthcare and the pharma industry that patients need to be involved in the whole process of researching, developing and taking medicines.

This is isn't just the 'right thing to do' – involving patients at all these stages could eventually result in treatments which more effectively meet the needs of patients, and produce greater medicines compliance. If done right, this should create greater value, and more impact.

I was among the hundreds of people who attended the recent eyeforpharma summit in Barcelona, and this drive towards patient-centricity was one of the key themes.

Among the most high-profile, and respected, leaders of this approach is Lode Dewulf, UCB's chief patient affairs officer.

He addressed the conference on this theme and, talking to me between sessions, said pharma and healthcare systems needed to think seriously about how to fundamentally change their culture and processes.

"We need to ensure we take a multi-focal, multichannel approach to patient insights," he said.

"We mustn't make the same mistakes we did with the medical key opinion leader model, and that means we should stop being control freaks."

Dewulf admits that pharma has already come a long way in terms of its attitudes – it used to approach patients and patient groups only once a drug was on the market. He says now it is far more common to enlist patients to help design better protocols and even drive research objectives.

Meta framework

He points out that the whole area of patient-centricity still lacks a single, over-arching approach – what he calls a 'meta framework'. This would help structure pharma-patient engagement, and allow a variety of patient groups to be involved throughout the drug development lifecycle.

"We need input from different types of patients. At some stages, for example, we need the so-called 'uninformed patients' who can explain what it's like to live with a particular disease – this is their expertise.

Europe has taken major strides in helping to create more truly 'Expert Patients in Medicines Research & Development' through the year-long EUPATI (European Patients' Academy on Therapeutic Innovation) programme.

This gives participants training on the basics of drug development, and how to engage with a clinical trial protocol.

"We need all these different types of patient, and we need to figure out how and when to bring them into the process," he points out. We're still working on this, but new models are emerging and we are heading in a good direction."

Different types of patient – and how to really understand them

Like all good communication, getting the most from patient insights requires a multichannel, multi-format approach. The best strategy draws on a healthy mix of sources: one-on-one feedback with individual patients; big data; patient groups; and unaffiliated patient groups.

Dewulf says you cannot only use population-level big data.

"You need the averages and extremes that come from big data and you need the individual, inside observations that come from one-on-one feedback. Stay with the patient for the day, observe what they are doing; it may even be different from what they are saying," he advises.

Pharma can also engage with patients in organised patient groups, or people sometimes called 'unaffiliated' patients or patient opinion leaders (POLs). These are often the online blogger or Twitter user who is not part of a patient organisation, or participating in a clinical trial, but has 10,000 followers because he is the father of a child who is being treated for diabetes, for instance.

Dewulf credits Anne Beal, chief patient officer at Sanofi (who was also speaking at eyeforpharma) as the first to delineate these different sources of patient insights. She has proposed that, before making an important strategic decision involving money and risk, pharma companies should have their insights validated by at least three different patient sources.

The KOL model has betrayed itself

Dewulf stresses the dangers that the industry goes down the same route with patient advisers as it did with key opinion leaders (KOLs).

"Having spent almost 25 years in medical affairs, I've seen both the benefits and some of the pitfalls of advisory boards and KOLs. Ultimately, I believe the KOL model has betrayed itself, with some advisors becoming KOLs first and doctors second, practising so-called 'hotel-based' medicine as they move from meeting to meeting. We must avoid similar pitfalls with patients."

He adds that it's useful to talk to patients who have been exposed to pharma companies and have a broader view of healthcare but says they shouldn't be the only source.

"We need to remember the golden rule: always talk to some real patients; and adopt the multi-format and multichannel approach."

Pharma must release control

Lode states that, in patient education, pharma must make sure that it doesn't dominate or play too big a role.

If a pharma company is sponsoring too much education in a therapy area, there is a huge loss of credibility. While that's regrettable, he says, it's a fact.

One answer is true public-private partnerships, similar to those employed by Europe's groundbreaking Innovative Medicines Initiative (IMI). If the rules are clear, and there is true transparency, then patient education works, he believes.

"As an industry we need to do something we have been very bad at in the past – we need to let go of control."

Research shows that patients still trust online information from institutions like the UK's National Health Service (NHS), or hospitals such as the Cleveland or Mayo clinics in the US. But there remains a clear need to help patients discriminate between high quality information and the sometimes dangerous misinformation found on poor websites or via 'Dr Google'.

One promising development is the NHS Information Standard certificate, a seal of quality for all organisations producing evidence-based health and care information for the public.

He says he can envisage both companies and patient associations carrying this

Information Standard quality mark for their medical information. A rigorous assessment such as this would reassure consumers that the information is accurate, objective, evidence-based and up-to-date.

Integrating new knowledge into the eco-system of care

Once patient inputs start to be generated, the question is how to translate that knowledge into solutions that are integrated into what Dewulf calls 'the ecosystem of care'.

"I don't have the answer, but none of us will find it in isolation. We need to sit with the other parties and say: how can we make this work?"

UCB was proud to win the Most Valuable Pharma Collaboration prize at the eyeforpharma Barcelona Awards 2016 for its Joint Working Agreement Programme that delivers training programmes for practice nurses, GPs and pharmacists to improve the care of epilepsy patients.

The company was able to fund a specialist epilepsy nurse in a part of Scotland that hadn't had one before.

Dewulf clarifies that, importantly, UCB and the NHS trust built in metrics of success that would allow the NHS to fund, and even expand, the project in the future.

"This was a small initiative, and it was isolated, but it was scalable because, for the first time, we actually worked with NHS Scotland to address a real patient need in such a novel way."

Finally, all these strategic goals require patient organisations and charities to change their views of pharma – including shaking off the notion that it should simply provide funding with no further engagement.

"Essentially, we moved away from the old charity model to one of actually helping the system to improve. But you can only do that if you sit at the table from the start and don't think, 'we're pharma, we've got the solution'. That just doesn't work."

About the author:

Paul Tunnah is CEO & Founder of pharmaphorum media, which drives better communication, connection and collaboration between the pharmaceutical industry and other healthcare stakeholders. Its suite of services, from publishing ( to content-driven engagement consulting ( are underpinned by the common strengths of extensive global networks, a firm finger on the pulse of changing market dynamics and deep expertise in creating engaging, relevant media.

Reach him through the site contact form or on Twitter @pharmaphorum.

Read more from Paul Tunnah:

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