Prof Benedikt Van Nieuwenhove, Managing Director of ECCRT, discusses the forthcoming PFMD ‘How-To Module for Capacity Building’ and how the COVID-19 pandemic is shifting attitudes to online learning

Training, including online education, can play a key role in developing mutual understanding between clinical researchers and the patients whose needs they aim to meet. The challenge is to identify and share quality resources designed to equip stakeholders with the knowledge and skills they need to engage effectively.

The PFMD How-To Guide on Capacity Building brings together a diverse group of academic, clinical and industry researchers with patients and patient representatives. Together, this group has been building a repository which could become the go-to hub for patient engagement training resources.

‘Patients need to understand how the industry works and companies need to know what’s important to patients,’ says Prof Van Nieuwenhove who runs the European Centre for Clinical Research Training (ECCRT). ‘Training can help to bridge the gap.’

A wide range of courses have been developed by industry and others, with a smaller number of resources available to patient advocates. ‘There is a huge need on the patient side,’ Prof Van Nieuwenhove explains. ‘The patient community is large and diverse: they address multiple diseases and have to consider geographical, language and cultural differences. There is also a capacity problem: patient advocates often move on if they are cured or if they can no longer engage for health reasons.’

Foundational knowledge

One solution is to build a foundational layer of knowhow that covers the principles of patient engagement – independent of disease. A first step to achieving this is to map the current landscape.

The PFMD Working Group on capacity building has completed an inventory of available resources, helping to identify gaps that must be filled. ‘The next phase will be to fill those gaps, showing patients they can be involved in medicines development,’ he says. ‘If we get this right, it should be in the DNA of every doctor to point patients towards the resources they need to engage if they are eager to do so.’

The process also highlighted diversity in the quality of resources, particularly free online courses which are not always updated regularly. Good quality material requires funding to produce and maintain. This does not mean patients themselves must pay for training courses from their own pocket, but that independent patient-focused content should be supported in order to build capacity.

The demand is there. Prof Van Nieuwenhove said the Working Group’s own experience in developing the Guide shows the level of commitment from patient representatives: ‘Patient members of our group were very engaged – sometimes working on Sundays around their other work and family commitments. It shows how desperate they are to move this process forward.’

Online content will play a growing role in meeting this demand, he says. The current COVID-19 pandemic has accelerated uptake of online learning and homeworking, increasing interest in resources such as the ECCRT’s virtual campus.

‘The world will come out of this crisis with a totally different perception of remote learning,’ Prof Van Nieuwenhove. ‘We have to take this opportunity to answer the need for virtual training in clinical development.’ In the process, he says, we can significantly increase the capacity of all stakeholders to work together and understand one another better.

‘It shouldn’t be researchers on one side and patients on the other. One day, we’ll all be patients, so we have a shared interest in filling the gaps we have identified and looking forward to the day when the first drug is approved that has been driven by patients rather than industry alone.’

Find out more about PFMD’s patient engagement training courses