Approach to patient and public involvement
As noted above, our external advisory group had a lay chair as well as lay people and people with lived experience. Lay people and patients/carers with a range of lived experience attended the four stakeholder workshops. Additional patient and lay input was obtained in two ways.
Firstly, a patient participation group with representation from all participating practices met approximately 3-monthly online. An average of 11 participants attended across 6 meetings over the course of the study. An initial plan for members of this online PPI group to each ‘buddy’ a friend or relative who was less digitally enabled had partial success (some members were able to convey the perspective of someone less digitally skilled and equipped than themselves), but we did not feel that this approach fully captured the perspective of digitally excluded people.
Secondly, therefore, a separate reference group of eight people was recruited in one deprived locality via a social support day centre and consulted via in-person meetings. This latter group was proactively recruited by one of the researchers in residence (Sarah Rybczynska-Bunt) to ensure that the voices of people likely to be digitally excluded were captured in the RBD2 study. It included people with experience of, or at risk of, digital exclusion (e.g. lack of digital devices, low digital literacy, homelessness, and complex health or social care needs).
Both these groups gave periodic feedback on our emerging findings and made suggestions from a lived experience perspective. For example, after a workshop held in Plymouth on Optimising Access for Patients with Refugee and Asylum Status, practitioners from refugee support agencies alongside our public advisors on RBD2 highlighted the need for extra support for those who are recent migrants and non-English speaking. Information packs were co-created with patients about their access rights to primary care and signpost to other guidance and resources that explain in more detail how the NHS works (translated into six languages – Farsi, Arabic, Kurdish, Sorani, Tigrinya and French). While not part of the original grant proposal, these were needs led and are being used by the practice team.
In addition, Nadia Swann, a patient/parent with lived experience of a life-threatening near-miss experience from remote consultations attended as guest speaker at our Parliamentary dissemination event in April 2024. She recounted a powerful personal story which illuminated some of the research findings we were presenting (see Impact of the study to date).
Dissemination to participants
Researchers in residence visited each participating RBD2 practice in late 2023, giving a presentation which summarised the overall RBD findings and specific feedback on that practice. We created a layered and flexible universal slide deck that could be adjusted to the needs and themes that were pertinent to each practice and were delivered in various formats ranging from informal ‘lunch and learn’ to practice staff, to more structured weekly seminars. The patient refugee packs (detailed in Engagement with partners and stakeholders) have been shared with practices.
Representatives from the practices (clinicians and support staff) were invited to the four main workshops, the dissemination event in Parliament in April 2024 and the final Implementation workshop on 5 July 2024 in Oxford.
We held a webinar for patients and lay people in May 2024 (including but not limited to patients from the participating practices), which was attended live by 50 people, recorded and recently put on YouTube (https://youtu.be/iwL7q4WylXs?si=sR6VZoXKRchgRcmf) and since watched by an additional ~150.
We are currently working with a design company to produce PDF and paper versions of a number of key outputs for clinicians, patients and lay people in both digital and non-digital formats. These include (1) one-page summaries of eight academic papers; (2) additional summary tables of the key competencies for remote and digital primary care (from our staff training paper82); (3) digital archetypes (from our digital candidacy paper63), and persona71 papers; (4) what patients and clinicians should expect from their consultation (from our safety paper30); and (5) a clinician-facing guide on supporting patients with digital navigation (drawing on our digital candidacy63 and reflexive imperative66 papers). The ModCons study continues to work with three RbD2 practices (see above), including codesigning resources with and for practices, to support patients with access and triage. These will all be freely available on the study website and links and distributed through our networks.
We have produced policy briefings (via the Nuffield Trust) – see Additional information for full list.
We presented findings of our safety substudy to NHS Resolution – see Impact of the study to date.