Digital participatory workshops with patients and health professionals to develop an intervention for the management of polypharmacy: results from a mixed-methods evaluation and methodological conclusions.

ABSTRACT

BACKGROUND: In the COVID-19 pandemic, numerous researchers postponed their patient and public involvement (PPI) activities. This was mainly due to assumptions on patients' willingness and skills to participate digitally. In fact, digital PPI workshops differ from in-person meetings as some forms of non-verbal cues and body language may be missing and technical barriers may exist. Within our project HYPERION-TransCare we adapted our PPI workshop series for intervention development to a digital format and assessed whether these digital workshops were feasible for patients, health care professionals and researchers. METHODS: We used a digital meeting tool that included communication via audio, video and chat. Discussions were documented simultaneously on a digital white board. Technical support was provided via phone and chat during the workshops and with a technical introduction workshop in advance. The workshop evaluation encompassed observation protocols, participants' feedback via chat after each workshop on their chance to speak and the usability of the digital tools, and telephone interviews on patients' and health professionals' experiences after the end of the workshop series. RESULTS: Observation protocols showed an active role of moderators in verbally encouraging every participant to get involved. Technical challenges occurred, but were in most cases immediately addressed and solved. Participants median rating of their chance to speak and the usability of the digital tool was "very good". In the evaluation interviews participants reported a change of perspective and mutual understanding as a main benefit from the PPI workshops and described the atmosphere as inclusive and on equal footing. Benefits of the digital format such as overcoming geographical distance, saving time and combining workshop participation with professional or childcare obligations were reported. Technical support was stressed as a pre-condition for getting actively involved in digital PPI. CONCLUSIONS: Digital formats using different didactic and documentation techniques, accompanied by technical support, can foster active patient and public involvement. The advantages of digital PPI formats such as geographical flexibility and saving time for participants as well as the opportunity to prepare and hold workshops in geographically stretched research teams persists beyond the pandemic and may in some cases outweigh the advantages of in-person communication.

Digital patient and public involvement (PPI) activities differ from in-person meetings. For example, some forms of non-verbal cues and body language are limited and technical barriers may exist. Therefore, some research teams were hesitant to switch to a digital PPI format during the COVID-19 pandemic and postponed their PPI activities.In this paper, we aim to describe, how we adapted a PPI workshop series to a digital format, how patients and health care professionals experienced these digital workshops, and which conclusions we have drawn for future digital PPI activities. The workshop evaluation encompassed workshop observation protocols, participants' feedback via chat on their chance to speak and the feasibility of the digital tools, and telephone interviews on participants' experiences.The study results showed that moderators had an active role in verbally encouraging every participant to get involved. Technical challenges occurred, but were in most cases immediately addressed and solved. Most participants rated their chance to speak and the feasibility of the digital format as "very good". They described the atmosphere as inclusive and on equal footing without hierarchy between different stakeholder groups. Participants reported benefits of the digital format such as overcoming geographical distance, saving time and combining workshop participation with professional or childcare obligations. They stressed technical support as a condition for getting actively involved in digital PPI.We conclude that some advantages of digital PPI may persist beyond the pandemic. Therefore, we encourage research teams to discuss the question of digital or in-person PPI with the involved patients and health professionals and decide on a case-by-case basis.