OP0209-PARE The patient voice in arthritis research: a collaborative approach to embedding ppi into research strategy
Authors: N. Nestor, A.G. Wilson, E.R. Dorris
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Background</h3> Public and Patient Involvement (PPI) encompasses a variety of ways researchers engage with people for whom their research holds relevance. Active and formal PPI can result in increased patient support for research and improved likelihood of patient involvement in the case of clinical research, including improved relevance to patient quality of life. As a research centre, we decided to develop our own PPI initiative. In order to develop a meaningful and productive partnership, we have developed this initiative from conception with our patient insight partners. <h3>Objectives</h3> The overall objective is to improve our research quality, relevance and outcomes. We aim to ensure that the real-life experiences of people living with arthritis are considered in the decision making processes around arthritis research. <h3>Methods</h3> A community approach to recruitment of patient insight partners was used. Social media, advocacy charities, and local community events were the predominant source of recruitment. Three initiatives were proposed: steering committee, patient insight panels, and a patient educator programme. A discussion forum between patients and researchers was used to determine the feasibility, interest and accessibility of proposed initiatives. An independent facilitator was commissioned to prepare an unbiased report of the discussion forum, upon which the PPI strategy was developed. <h3>Results</h3> Patient support for the PPI initiative was overwhelmingly positive. A number of potential barriers to participation were identified. 1) Steering committee: Risk of tokenism and the potential intimidation of a structure that was too formal. Mechanisms to overcome included multiple patient representatives, detailed terms of reference and a supportive environment with a rotating chair. Our patient insight partners proposed a three-tier structure: a patient focus group that nominates the steering committee members and a plenary meeting to be kept informed about research they are involved in. 2) Insight Panels: Access to technology was viewed as the major barrier to remote involvement. Mechanisms to overcome included multiple modes of communication: online, telephone, postal communication. Providing the opportunity for face-to-face or speaking directly with a researcher in an informal setting was seen as crucial in building interpersonal relationships and sustaining involvement. 3) Patient Educator: Extremely well received. Barriers to participation revolved largely around travel and physical accessibility. This can be overcome with in-house resources. Our research strategy is being revised with the PPI strategy as a central tenet. We are adopting the new steering committee under the three-tier format and yearly research meeting with plenary session. We have a PPI newsletter, the editorial board for which is made up of researchers and patient insight partners. A patient educator module is under review for incorporation into a new PhD programme. We have expanded our research into multidisciplinary areas, with new sociology researchers and psychology collaborators. <h3>Conclusions</h3> The development a true patient partnership in our group has fundamentally changed the scope and remit of our research, allowing us to expand our biomedical and clinical research into a more holistic model. <h3>Disclosure of Interest</h3> None declared