Developing the patient engagement system

by | 19 Sep 2019

Nicholas Brooke, CEO of PFMD, tells Gary Finnegan why solving the patient compensation conundrum will unlock the power of patient engagement
Patients, industry and regulators are making patient engagement (PE) the norm in medicines development. However, as PE goes mainstream, one of the stickiest issues to overcome is how to reward patients and patient advocates for their contribution.
The market for patient experience and expertise is still at an embryonic stage – with some patients potentially commanding significant remuneration. A strong signal from regulators that they expect to see PE in medicines development would be welcome but the lack of capacity in the patient community could mean there are too few patients to meet industry demand in some disease areas.  
‘There’s a huge shortage of patient capacity,’ explains Nicholas Brooke, CEO of Patient Focused Medicines Development (PFMD). ‘This puts patients in a strong position to set the market price. Initiatives such as EUPATI are vital to meeting this rapidly growing need in the market.’
Brooke believes stakeholders must work together to address specific obstacles to PE such as legal contracts between patient organisations and industry, and establishing a Fair Market Value (FMV) for patients’ contribution to drug development. ‘The only way to do this is through co-creation,’ he says. ‘We need to define the best methodology for calculating compensation, reimbursement or remuneration. That is why the work done by PFMD, WECAN, the National Health Council, EFPIA and others is so important.’
Much of the complexity stems from the diversity in the type of contributions made by the patient community. Some patients bring personal experience to the table while other patient advocates may offer significant expertise; some patients do not want payment while others depend on it to make their work viable; patients in some countries could lose health or social welfare benefits if they earn an income; and the level of compensation or fees may vary from country to country given variation in costs of living.
‘All players face these complex issues, typically at the start of their collaboration – potentially polluting their relationship from day one,’ Brooke says. ‘They are usually juggling several other issues at the same time, so they often struggle to find a coherent solution.’
PFMD has been playing its part in devising a collective response to these challenges. A comprehensive survey of health stakeholders’ views on Fair Market Value, built on a questionnaire for patients developed by WECAN, has helped to deepen understanding of the full ecosystem. PFMD is also working with WECAN on legal contracts which can be used as a reference for stakeholders at the beginning of their engagement. While the NHC is looking to adapt this work to the US market, PFMD and European partners can help to adapt NHC’s Fair Market Value Calculator to the European context.
‘This is helping to structure discussions about remuneration and to put a price on the contribution patient advocates, patients and carers make,’ says Brooke. ‘We are working with more than 60 organisations to find solutions. By providing stakeholders with a reference contract, we give them a base to work from and help companies to understand the perspective of patients.’
But there are still questions to answer when it comes to the large gaps in costs faced by various European stakeholders. For example, should payment rates for attending a meeting reflect the costs associated with the host country of the meeting or should it be based on the patient’s cost of living in their home country? There may not be a simple one-size-fits-all solution.
While enormous progress is being made by the drug development community, there are still significant issues to address: ‘Knowing which expertise to use, and when in the lifecycle of the drug it can add more value, is often quite unclear for stakeholders.’
Brooke remains positive about the progress under way and the community’s capacity to solve its shared problems. ‘I’m optimistic that we can bring more sense to the market and solve a lot of these issues together,’ he says. ‘And, when we achieve this, I’m very optimistic that it will help to ease negotiations between patients and industry by providing a reference or a standard on which they can build.’

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