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. Supplementary Information The online version contains supplementary material available at 10.1186/s40900-022-00387-1.

Talking Trials: An arts‐based exploration of attitudes to clinical trials amongst minority ethnic members of the South Riverside Community of Cardiff

“… 37 Other benefits such as geographical flexibility and saving time for participants have been identified and might in some cases offer more practical means for the patient and public involvement in comparison to an in‐person communication. 38 …”

“…The move to online workshops in the time of the COVID‐19 pandemic has been acknowledged as a useful method to generate rich data as well as benefitting both researchers and participants in democratising research processes 37 . Other benefits such as geographical flexibility and saving time for participants have been identified and might in some cases offer more practical means for the patient and public involvement in comparison to an in‐person communication 38 …”

Adapting Patient and Public Involvement processes in response to the Covid‐19 pandemic

“…One potential challenge is that the online format may raise new obstacles to interaction given reduced opportunities for informal encounters that can support group formation. We aimed to address this with virtual coffee and smaller groups; others have gone further towards building ‘personal relationships’ through telephone contact, technical support and setting up the atmosphere of a break by sending drinks and snacks to participants' homes for use on the day 21 …”

“…It is important to consider the demands of the PPI sessions themselves, whether the online format might encourage or discourage participation, and shape the contributions that participants can make. Engler and colleagues 21 asked participants to record views on a virtual whiteboard and reported that for their participants this ‘facilitated a feeling of participation and co‐production’, but for people with, for instance, visual impairments, low literacy or dyslexia, such aspects of online participation may be discomforting. Consultation methods need to be anchored to their context and should create a satisfying experience for participants.…”

“…We aimed to address this with virtual coffee and smaller groups; others have gone further towards building 'personal relationships' through telephone contact, technical support and setting up the atmosphere of a break by sending drinks and snacks to participants' homes for use on the day. 21 PPI processes and the online environment should be safe and comfortable for all. Some topics will invite participation by those with significant health needs or vulnerabilities and/or their carers.…”