Patient safety

Role of patients in health and care innovation

Hilary Newiss, chair of National Voices and Patient Champion on the government’s independently chaired Accelerated Access Review, discusses the importance of patient engagement at every stage of the innovation pathway.

The development of new medicines and treatments conjures up images of multinational pharmaceutical firms, cutting-edge technology, white coats and laboratories. Why doesn’t it make us think of patients, the people who stand to gain from new medicines and treatment? 

Last year, I was invited to be the champion for patient and service user engagement in the government’s Accelerated Access Review which aims to speed up access to innovative drugs, devices and diagnostics for NHS patients. My role is to ensure that the voices of those most affected by access to innovation – patients and service users, and the general public – are heard throughout the innovation pathway. 

A key element of the review has been articulating what is important to patients and service users at every stage of the innovation pathway. We have worked in partnership with patients, service users, carers and charities. In doing so, we have found some differences between the current approach to developing new medicines and treatments and what people really want. 

Included at every stage 

Whilst getting access to new and innovative treatments matters to patients, we have received strong feedback from patients and service users that they should be heavily included at every stage of the research and innovation process. 

From setting priorities for research, to designing the research process, to agreeing what treatments are made available;  there is value in ensuring a strong patient voice at every step. Knowing that people with similar experiences and concerns would be involved in deciding what research is most important, what the research questions should be and what outcomes should be measured, reassures people that the process has had their best interests at heart. 

Our engagement with patients, carers, and charities revealed that people want to know that they (and people in their situation) are being listened to, that the expertise and unique knowledge they hold about their condition and how it impacts them is recognised throughout the innovation pathway. They want to know that what they offer to those conducting or funding research is valued, that it isn’t just a box-ticking exercise. 

Innovators have already started to take a more meaningful approach to patient involvement, with positive results. Arthritis research has shifted from finding a cure, to focusing on pain relief as a result of patient involvement. Some Academic Health Science Networks have held events with patients, service users, carers and charities and used the information gathered to develop products to help patients self-manage. Our innovators are starting to recognise the value of involving patients. 

Beyond ‘listening to’ 

Organisations involved in innovation and research should, however, explore ways to go beyond ‘listening to’ patients to identifying opportunities to work in partnership with patients and the charities that support them, when developing new treatments. Where patients and lay members are included on committees making decisions about what research gets funded, or research design, they should be recognised as equal partners, with specialist knowledge that is vital for achieving the best research possible. 

Supporting people to be involved 

Another theme that arose throughout our engagement work was the importance of supporting people to be properly involved. The information shared with patients and their families must be accessible. It needs to be in clear, everyday language that addresses their questions and concerns. Many patients will also need additional support to engage, whether this means a British Sign Language signer, a personal aide to attend meetings, or training in speaking and presenting. 

People also need support to make decisions about whether to participate in research, or indeed whether to try an emergent treatment. Again, they need to be able to easily access the relevant information – including what the potential risks are (and their scale), the expected benefits, how it is likely to interact with other treatments they’re already receiving, or with a co-morbidity. People expect good information to be available to them, and that their healthcare professionals would be up to date. 

Person-centred care and support is essential to help people make informed decisions about trials and treatment. This is true for all treatments of course, so innovation plays well into the shared-decision making movement that is gradually taking hold in the NHS. 

The role of patient organisations is also vital. Patient organisations have a wealth of knowledge and understanding about particular conditions and how these are experienced through the people they work with. They can speak out authoritatively on behalf of significant numbers of patients and service users. The support that these can offer people who want to get involved at any stage of the research process (including when trying new treatments) has been repeatedly emphasised to us. Patient organisations can help support and empower individual patients to share their views and stories, to engage as lay members on decision-making boards, and to ask for the best treatment. They can share information about approved new treatments, or about trials that are on the horizon. They can also help make information accessible to those not involved in research. 

Engaging patients, service users, carers, charities and the wider public in every stage of the development process can lead to better targeted innovation that responds to what people want, and meets their definition of a ‘good outcome’. It’s time to stop thinking about white coats and laboratories, and start thinking about people.

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