Put purpose before process: lessons from evaluating patient involvement in governance structures in health research organisations.

Abstract

Many health research organisations make strong commitments to involvement in their organisational strategies. This commitment is often operationalised via an involvement strategy, and evidenced by high quality, successful involvement within areas such as making research funding decisions, or policy development. One area that can prove more challenging is involvement in governance structures. Little has been written about impact or best practice in this context. This article reflects the wealth of knowledge and experience from Board members, staff and involved patients that has been shared during evaluations of involvement. Regretfully these people cannot be named as these evaluation reports have not been made public. The intention is to draw out general lessons to support wider discussion in this area, and share valuable insights from some of the more challenging experiences. With little guidance available, it is unsurprising that organisations tend to approach involvement in governance in the same way as other forms of involvement, leading to a focus on process - how to recruit, prepare and support patients to join a Board. The learning suggests that having a clear and shared understanding of the purpose of involvement at this strategic level may also be critical to its success. It seems that there are many different understandings of what this involvement is for and these are not often clearly defined. Involvement is also commonly confused with stakeholder engagement. Stakeholder engagement requires people to speak on behalf of others and to be representative of a wider community. In contrast, during involvement, patients contribute their experiential knowledge to decision-making as an expert in their own right. When making any kind of strategic decision people will refer to their values to inform their views. Involved patients are likely to hold different values to people who are an integral part of the health research system. This can lead to value conflicts which are best resolved by allowing considerable time for discussion and through skilled support from facilitators. Being prepared for these kinds of conflict to arise and having strategies and resources to deal with them, may be another important requirement for meaningful and impactful involvement in governance.