Five tips for involving patients and the public in research remotely: Insights from Covid-19
- Health & Social Care Research, Big Data & Digital Health
In April of this year, I was fortunate enough to receive Newcastle University’s Tilly Hale Award. The Tilly Hale award provides seed funding to facilitate patient and public involvement in research. I originally intended to use this funding to carry out three participatory workshops with people with dementia, their carers and professionals working in dementia care. But when Covid-19 struck and the UK went into lockdown, I quickly had to rethink my plans.
I joined a discussion group with colleagues in Newcastle University and began to hash out the practicalities of moving these participatory workshops online – a big thank you to Dr Bethany Bareham for facilitating this. We identified key facilitators and supports required for carrying out Public Patient Involvement remotely.
We must be flexible to change, and sensitive to contributors’ different emotions and priorities during this time. We must not make assumptions about certain populations’ abilities to use technology. Finally, we must acknowledge that we may not be able to use the best methodology or techniques; but this should not be perceived as a failure in the midst of a global pandemic.
Developing my remote Public Patient Involvement work with these core principles as the foundation allowed me to stay open-minded throughout the process; ultimately leading to a most enjoyable and insightful experience. I involved 33 contributors in total, co-developed a research fellowship proposal and identified contributors for a future Public Patient Involvement reference group – which will most likely be conducted remotely! Given this success, I’ve decided to share my five top tips for conducting Public Patient Involvement work remotely.
1. Look for contributors far and wide
I advertised my Public Patient Involvement opportunity on social media sites such as Twitter and Facebook, using relevant hashtags and promoting it to online support groups (with permission from the group moderators). I also asked local and national networks to advertise the opportunity through their newsletters, websites and social media. As I was looking for people with experience of dementia, I worked mostly with groups like VOICE, the Alzheimer’s Society, World Young Leaders in Dementia, and DeNDRoN research network, but I also had positive responses from daycare centres, regional dementia services and small charities like the Lewy Body Society. As the Geordie saying goes, “Shy bairns get nought”! Using this strategy, I was able to involve contributors from all over the United Kingdom – making my findings much more representative of the entire nation.
2. Pick the best format for everyone (and be patient)
I originally planned to conduct three participatory workshops with ten people in each. However, to conduct this Public Patient Involvement work remotely, I needed to make accommodations for contributors’ personal situations and comfort zones. Not everyone has a computer or is “tech-savvy”. It is already difficult to access underserved populations through established networks, so you don’t want to impose even more limitations on who can participate. I gave all my contributors the choice to take part in either participatory workshops on Zoom, or one-to-one phone calls with me. By the end, approximately half of my contributors opted for the Zoom workshops – so I knew I made the right choice!
Both methods come with their own pros and cons. Participatory workshops allow contributors to bounce off each other, putting less pressure on you to keep the discussion going. They are useful if you are under time-pressure, and importantly, they give people the opportunity to socialize during a time when they may feel more isolated than usual. However, technical difficulties almost always occur and you need to build time into the workshop for this. Importantly, some people may not be comfortable with using video-conferencing technology, but still want to take part – you can facilitate this by sending them guides and taking them through a practice run a few days beforehand.
On the flip side, phone calls may allow contributors to open up more. They may be more suitable for specific populations, such as people with social anxiety or people who may be overwhelmed by all of the videos on the screen. However, several phone calls take up a lot of time, and you may need to work harder to tease out the discussion.
3. Keep ethics in mind throughout
Ethical considerations feed through the entire process, from how you contact contributors, collect information and conduct the workshops. I worked with the Alzheimer’s Society to ensure my methods were ethically sound, including the information I provided contributors, and the way I recorded quotes and opinions. Before the workshops and phone calls, I sent a briefing with all the questions I would ask and an agenda so that people knew what to expect. I identified potential problems that may occur and emailed the contributors beforehand. I asked them to make sure they had somewhere safe and comfortable to speak to me, to consider beforehand if anything might upset or distress them while speaking to me, and I encouraged them to send me any questions. To ensure the platform was secure, I sent links to meetings privately, and enabled the waiting room feature to make sure no intruders entered.
4. Five is a crowd
When conducting a participatory workshop, keeping the numbers small is the key to success. This prevents the workshop from getting chaotic, and allows everyone the chance to have their say within a reasonable time. I kept my workshops to approximately an hour – this gave me enough time to discuss my work, discuss five core questions, and establish where the research priorities should lie. It also helped to prevent Zoom fatigue – something many of us are experiencing right now.
I began each workshop with a round of introductions, and either used a “round robin” approach or asked people to raise their hands if they had questions or comments. Not everyone wants to have their cameras on; if that is the case, make sure contributors know how to use the hands up function on Zoom. Give everyone a chance to speak, and make sure to ask if anyone would like to pick up on previous points that have been raised.
5. Work with people, not against them
If you are working with people who may have special requirements, make sure to work with them or their loved ones to ensure that everything is as comfortable, accessible and easy as possible for them to take part.
For example, I had people with dementia as contributors for my work. Some people were perfectly happy to be involved in workshops with other people, but others said they found too many people talking to be confusing and uncomfortable for them. For these people with dementia, I held workshops with just themselves and their loved ones. I sent them a short synopsis of the background of my work beforehand, so that they wouldn’t feel overloaded during the workshop. I designed and personalized my questions with their loved ones to make sure they were appropriate. One gentleman’s wife provided me with photographs, which I used to prompt memories and feelings relating to my questions. Most of all, I made sure they had time to process the questions I asked, and that they felt comfortable to ask my any questions that occurred to them.
Although conducting Public Patient Involvement remotely may not feel comfortable or familiar to many of us researchers, it is possible and very beneficial. It gives you the opportunity to collect important insights and co-develop research without borders, while including contributors who may not feel comfortable or able to come to face-to-face workshops and interviews. Although these tips are just a starting point, I hope they are helpful to you as you embark on your own remote Public Patient Involvement journey.