Universities and colleges are our great bastions of knowledge. Despite the many pressures on their time, one of the great joys of being an academic (I am using the term academic broadly) is in being paid to generate new knowledge. Lauding academics as knowledge holders and experts bestows on them the esteem required to ensure that they are listened to and given the opportunity to guide us towards an improved society.

However, that same lauding of expertise creates challenges when it comes to involving civil society in academic research. Patient and public involvement (PPI) requires at its heart equal partnership. It also requires equal respect for the knowledge that each party contributes to the planning and undertaking of research. Unfortunately, our engrained respect for academics can have the side-effect of placing non-academics on the backfoot in any research partnership.

From the perspective of Health Research Charities Ireland (HRCI) and our members, this has very real consequences when it comes to our work in PPI. We recently launched a guide on developing and using evidence for charity advocacy campaigns. Within it we stress the value of partnering with academics to generate evidence that will benefit the community of people the charity represents. Such partnerships are largely a positive experience. However, they can also bring with them many challenges. Chief among these can be a loss of control for the charity.

A charity’s research idea, which may have been developed, refined and nurtured over time, must often be ‘handed over’ to a researcher, in order for funding to be sought for the project. The charity will possibly be named on the grant application but due to current research funding practices they are unlikely to be included as an applicant and only very rarely can they apply to research funding bodies in their own name. This is the case even if they have research experts in-house, as many of our member charities do.

With a strong partnership and good communication between the academic group and the charity things can still work quite well, but often the imbalance in who is responsible for managing the funding and who is perceived to hold the expertise can lead to a project becoming something different to what had been hoped for by the charity partner. Even in our bright new world where everyone theoretically understands the importance of PPI, this happens all the time. And whenever it does, it inevitably reduces the usefulness of the project findings and results in many frustrations along the way.

In attempting to overcome these issues, a helpful step would be to change how we allow community partners to be recognised on grant applications. This wouldn’t require a whole restructuring of current funding approaches but perhaps a new category of co-applicant; one with more equal responsibility for the work programme and with the inclusion of appropriate funding for their contributions.

On a related but separate point, as we move towards educating and informing patient organisations and the public about how to undertake PPI, there is also the potential for our reverence of academics to get in the way of the best approaches to take. It is important that we resource higher education institutes to empower the research community to do PPI. There is a danger however that we will see it as the sole responsibility of the higher education institutes to also be the ones to empower civil society to get involved in research. This would fail to recognise that it is perhaps the patient organisations that are the ones who best understand the perspectives of the populations they support. They know how to reach them, how to communicate with them and what support they are likely to need to get involved in research. They also have expert skills in communication, governance and policy that can be brought to bear, in order to ensure more inclusive, more relevant and more impactful research.

If we are serious about PPI, it is not enough to resource higher education institutes and presume that they alone should lead on research and on empowering all sides to partner in research. Patient organisations also need to be resourced to use their less recognised but equally valuable and different expertise. And when they are given the space and encouragement to be leaders, perhaps we will be able to reshape views on what it means to be an expert.

Note: HRCI recently developed a guide on the development and use of evidence for charity advocacy campaigns, in which there is a large focus on collaboration between charities and academic researchers.

Dr Avril Kennan, CEO, HRCI

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