3 steps for comprehensive patient collaboration

Janssen’s Daniel de Schryver tells us why it’s time to give patients a permanent seat at the table and improve health outcomes through patient-pharma dialogue.

I’m struck by just how much we thrive when we share a common purpose; when – as a society, a group or a family unit – we work together to achieve the same goal. It’s no different in healthcare. Pharma companies, healthcare providers and governments share a well-established common purpose: the desire to make disease a thing of the past. But healthcare is often a system of silos, and what can get lost in the gaps is the input of patients themselves. Which rather begs the question: how well are we caring for patients, if we can’t always hear their voices?

I saw a statistic in a Health Europe article, published in September this year, which reported that 81% of patients do not feel listened to by pharma companies. Patient-centricity has, I fear, turned into a buzzword. We must remind ourselves to focus on systematic changes – from the early R&D phases, all the way through to reimbursement discussions – that enable us to develop optimal solutions together with patients. In short, to ensure they have a seat at the table at every stage of the process.

To get back on track and embed a comprehensive collaboration between patients and industry, I believe we need to consider the following three areas:

“To ensure we are making a difference, we need robust KPIs, both short and long-term, to measure patient-industry collaborations. We must understand the value over time of these solutions”

1. Open conversations lead to better patient-industry collaborations

Pharma needs to convey a clear picture of who we are and what we’re trying to achieve. When the public sees patients working directly with us, it can still arouse suspicions, as if there’s some form of collusion going on. Transparency is crucial, therefore, so that any outcomes from our collaborations with patients are shared and accepted.

We have been adapting our processes at Janssen to put patients at the heart of everything we do. It’s a work-in-progress, because this means streamlining the way we work to include the patient voice within acceptable timelines, while still meeting compliance requirements. But the aim is for every function in our value chain to demonstrate how they have involved the patient in their decision-making.

A good example of a productive, open collaboration we’ve experienced with patients, clinicians and regulators is the one that resulted in the Psoriasis Symptoms and Signs Diary (PSSD). Through this outcomes measurement tool, patients keep comprehensive diaries of their condition, documenting what aspects of the disease affect them most.

A major insight revealed once the tool was in use was to not just focus on the percentage of the body covered by psoriasis – a patient with smaller areas of their face or hands affected, for example, may find it more difficult to cope compared to patients with larger areas affected on their backs.

Projects like these are time intensive, of course; this collaboration with psoriasis patients took five years to co-develop. But the important thing was that it worked, and that it has provided a great model of patient interaction for us to replicate.

2. Pharma must support patient empowerment

Patient empowerment is not a catchphrase; it is a genuine drive to enable patients to take ownership of their health. We need more people to see themselves as experts in their own treatment, so they feel able to provide input into key debates and initiatives. It should be our duty, as pharma, to help more people achieve this.

The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a good example of this in action. EUPATI is a public-private partnership run by a multi-stakeholder consortium. It brings together patients, pharma, academia, regulators, non-profit organisations, and health technology assessment bodies, and it allows trained patient experts to input into the R&D process, regulatory deliberations, and other initiatives.

In the UK, my colleagues have created a Patient Advisory Committee, two of whom mentor several members of the UK management committee, helping them to further embed the patient voice in their decisions. A more empowered patient helps improve solutions that are beneficial to their own health and the health of many other patients besides, thereby contributing to a healthier future for all.

3. Measure the success of patient-industry collaborations

To ensure we are making a difference, we need robust KPIs, both short and long-term, to measure patient-industry collaborations. It is rewarding to see the immediate impact these projects can have, but we must also understand the value over time of the solutions we are co-developing with patients.

Patients Active in Research and Dialogues for an Improved Generation of Medicines (PARADIGM) is a public-private partnership paid for by the European Commission and the pharma industry, and co-led by the European Patients’ Forum and The European Federation of Pharmaceutical Industries and Associations (EFPIA).

PARADIGM provides a framework for innovative patient engagement approaches and is able to demonstrate the benefits of these approaches to all stakeholders. Through this partnership, we have been able to support the development of solutions designed to not only improve an individual patient’s experience of care, but also the overall health of populations, and which, ultimately, should reduce the per capita costs of care.

Putting patients at the heart of the process

It’s essential to listen to what patients have to say, to identify solutions that are beneficial individually and collectively, and to provide feedback on how patients’ insights have helped shape better outcomes for all. If we can listen and listen well, and if we can show we genuinely care about patients’ views, then their contributions can make a real difference.

As I said at the start, we thrive when we are united behind one common purpose. We must be united with patients, and that common purpose must be their purpose.

So, to any patients reading this, I urge you to join a patient advisory group and multiply your impact, to study with EUPATI and become an expert, and – put simply – to get involved and be heard. And to everyone with whom we work across the industry, let’s follow the process: ask the patient, include them from the onset, and ensure their insights are at the core of everything we do. Let their voice be the driving force in our shared goal of making disease a thing of the past.

About the author

Daniel De Schryver is patient engagement & advocacy lead, Europe, Middle-East and Africa, at Janssen. He joined Johnson & Johnson in 2001 as Director Corporate Communications. In that function, he initially worked in the field of oncology. In 2006 he joined the Janssen teams working in Infectious Diseases where he helped to maintain and enhance the company’s relationships with the HIV Patient Community. Later, he built the external relationships in the field of Hepatitis C, before becoming the Global Therapeutic Area Communications Leader Infectious Diseases and Vaccines.