Insights into creating a virtual patient andpublic involvement initiative

ABSTRACT

Background/AimsPatient and public involvement (PPI) initiatives are important to ensurepatient-centered research. However, traditional focus groups canpresent challenges including the recruitment and retention of patientpartners. Additional challenges to patient involvement have also arisendue to the coronavirus pandemic (COVID-19). The University CollegeLondon (UCL) Patient Partners in Rheumatology Research initiativehas been developed to explore novel ways to boost patientinvolvement and foster an active collaboration between basicresearchers and patient partners.MethodsTwo online surveys were designed to obtain information with regardsto the expectations and practicalities of this initiative. One survey wassent to patients who had registered an interest in being patientpartners and the other survey to rheumatology researchers at UCL andUniversity College London Hospital (UCLH).ResultsWe received responses from 25 researchers and 21 patients. Themajority of patients who responded (71%) had not previously beeninvolved in PPI. Most of the researchers (84%) had previously utilisedPPI, however 20% of those had some difficulty accessing it.Most patients (86%) were interested in becoming a patient partner.Amongst those with reservations, one stated that ''I don't think I havethe qualifications to be involved with scientists and researchers''. Overhalf of patients (52%) were happy to participate in PPI more than fivetimes a year and most researchers (84%) expressed that five times ayear was acceptable. Patients favoured (52%) conducting PPI meetings after office hours (5-8pm) during the working week. Due to socialrestrictions because of COVID-19, we asked both patients andresearchers their preferred mode of meeting. Both groups favoureda mixed (virtual and face to face) meeting arrangement (81% forpatients and 68% for researchers). A third of patients (38%) expressedthat they would need technical assistance accessing a virtual meeting.Almost all patients (95%) were happy to contribute to lay summaryreviews remotely via email.ConclusionBased on the insights gained from the survey results, our PPI initiativemeetings will be hosted in a hybrid virtual/face to face format. Thesewill be held at a time and frequency that is convenient for the patientpartners to increase participation across wider demographics. Thissurvey has highlighted that we have to be mindful of certain patientperceptions of PPI which creates a barrier to patient involvement andthat some individuals may require further support in accessing virtualmeetings. By designing a PPI initiative that creatively addressed theneeds of both the researchers and patient partners we hope to createa platform for productive dialogue and collaboration to ensure patientcentred research, despite the changes brought about by the COVID-19 pandemic.