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Engaging people in research and innovation: how the six principles can help

Hilary Newiss, chair of National Voices and Patient Champion on the Accelerated Access Review, explains how six principles for engaging people and communities can help the development of health and care innovation.

As Patient Champion on the government’s independently chaired Accelerated Access Review, I’ve heard again and again from patients how it is vital that they and the public are involved throughout research and innovation. 

The interim report of the Accelerated Access Review, published in April, reflected this. The first of its five propositions was “putting the patient centre stage”. We argued that this will help ensure that innovation focuses on the outcomes that are most valuable to the people that use new treatments and technology. Patients and service users can be an effective voice for take-up of innovation and help promote the change that is needed in service design to support uptake. 

Innovative treatments and technologies have the potential to dramatically improve people’s healthcare. For example, Asthma UK has recently highlighted how wider use of smart inhalers could revolutionise asthma care. Public demand and a focus on user experience involving patients can help to speed up adoption of new treatments and technologies that will ultimately help to ease pressure on the system. 

Involving patients and the public 

The importance of involving patients comes as no surprise to us at National Voices: we know that good-quality health and care involves people at every step. In our role chairing the Five Year Forward View (FYFV)  People and Communities Board we recently supported the development of ‘Six principles for engaging people and communities’.  

These are intended to help local and national commissioners and providers understand how to create the ‘new relationship with patients and communities’ central to achieving the aims of the FYFV. These principles can also be applied to the development of new and innovative treatments. They can help those involved in research to better understand how and why they should engage people properly.

Principle 1: Care and support is person-centred: personalised, co-ordinated and empowering 

People with lived experience of conditions hold a wealth of information about how treatments are experienced and can provide valuable real-time data. Research participants should be treated as true partners in an endeavour that can transform lives. 

Principle 2: Services are created in partnership with citizens and communities 

Another clear message is that patients, service users and the public should be involved in decision-making at every stage. Research design should be coproduced by people with lived experience to ensure that it is accessible and focuses on the right outcomes. Patients can help break through the system barriers that prevent uptake of proven innovations, and make honest and fair assessments of what represents value for money. 

Principle 3: Focus is on equality and narrowing inequality 

Another theme that emerged was the importance of including diverse voices in research innovation. This means developing treatments for those with rare conditions, as well as ensuring that research (and decision-making) includes people from a range of ethnic minorities, people who are LGBT, and people from different socio-economic backgrounds. 

Principle 4: Carers are identified, supported and involved 

Carers often hold a huge amount of knowledge about the conditions of the people they support, and how treatments and technologies impact them. Involving them in research design, or including their views and experiences as data, could help improve uptake of practical innovations that may improve their independence as well as that of the patient. 

Principle 5: Voluntary, community and social enterprise, and housing sectors are involved as key partners and enablers 

Similarly, charities working closely with patients, service users and carers can use what they hear about their experiences to define patient need which could stimulate areas for research and innovation. They will also have access to people with lived experience and can help recruit research participants, or people to be involved in research design. 

Principle 6: Volunteering and social action are key enablers 

Patients and the public already make a huge, voluntary contribution to research and innovation; this should be recognised and fully valued. People involved in research want to know that researchers will make the most possible of their participation. 

Conclusion 

At the heart of each of the principles is involvement in health and care – on an individual, group or community level. At National Voices, we believe that people are the experts in their own needs, and engaging with them leads to improved outcomes and experiences. 

We think this is true for research and innovation. We know that patients, service users, carers and the public hold a wealth of knowledge that, if accessed, can improve the way we develop and adopt new treatments and innovations. The six principles help demonstrate how this can be achieved.

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