Using an online discussion forum for public engagement with older adults
Dapo Ogunbayo, Newcastle University
As part of a seedcorn award from the SPCR, I was involved with the ongoing James Lind Alliance (JLA) Priority Setting Partnership (PSP) focussed on multiple conditions in later life, being led by Newcastle University’s Campus for Ageing and Vitality in partnership with Age UK and the NIHR. I worked with the project team in developing a UK-wide survey targeting the key stakeholders (people aged 80 years and above, family members/carers and health and social care professionals) to help in identifying priority areas for future research in multimorbidity and ageing. One of the key issues that arose was how to engage older people (and their families/carers) to take part in the survey. We considered using a wide range of platforms to promote the survey including patient engagement groups and online forums.
Voice North is a national patient engagement organisation hosted by Newcastle University’s Institute for Ageing with the aim of capturing the public’s vast experience, ideas, opinions and expectations about research, innovation and policy developments which affect their lives. The Voice North digital platform is an online forum that supports the public in getting involved in research and innovation to contribute their ideas, knowledge and experience. Voice North members across the UK often use the Voice North platform (website) as a community forum to connect and interact with each other, join a special interest group, contribute their views and participate in online discussions.
The use of multiple medicines by older people with multimorbidity was a key topic that was covered in the JLA PSP survey development. With suggestions from a few members of the PSP project team, I was encouraged (due to my interest in polypharmacy and multimorbidity research) to explore the views of older people and their families/carers on multiple medications use as a ‘spin-off’ priority-setting project using the Voice North digital platform. The Voice North coordinators were also keen to explore innovative ways of moderating and engaging Voice North members in online discussion via the digital platform (www.voicenorth.org).
In setting the scene for the online discussion, I wrote a brief to introduce the essence of the discussion topic and this was reviewed by a lay Voice North member to check that it was suitable for a lay audience. I also made a 2-minute introductory video of me further explaining the aim and scope of the discussion topic whilst also encouraging members to share their own experiences or those of family members or other people they knew that were taking multiple medications. We used the video to experiment whether or not it would promote more engagement in the discussions. A week before the discussions were scheduled to take place, the Voice North website coordinators started promoting the topic and introductory video via social media (twitter) and other networks.
When the discussion topic went ‘live’ online, Voice North members started posting comments almost immediately. I got an email notification each time there was a new posting on the discussion page. By the actual start date of the discussion (a week after it went live), I had received over 50 email notifications! During the week-long discussion period, I dipped in and out a few times during the day where I actively moderated and stimulated the discussions by responding to each individual posts and posed my thoughts and more on what had been discussed. I answered questions/queries posted by participants and offered advice/suggestions as best as I could. I also tried to steer the discussions towards the area of interest to me which was the use of non-prescribed medicines by people with multimorbidity. This was quite challenging and it highlighted to me the differences in priorities of what we (researchers) sometimes think is important, and what those whom we research (patients) think is more important to them.
...online discussions reinforced to me the value of incorporating the ‘patient/public voice’ in the research process...
At the end of the week-long period, a lot more people engaged in the online discussions than I had expected given the demography of the target population. While a number of the participants were the usual contributors which was not surprising, the Voice North coordinators noted that there was also a significant number of new contributors when compared to other previous online discussion series. As this was not research per se, it was not possible to collect any quantitative demographic information from those that participated but many of the participants happily shared information about themselves and their experiences with multimorbidity and multiple medications use. Many participants opened up about how they developed their own unique strategies around multiple medications use with or without (mostly without) the input of health care professionals.
The online discussions reinforced to me the value of incorporating the ‘patient/public voice’ in the research process. It helped me to reflect on the research questions around my research interest area and how these could be further refined based on the type of questions/queries from those that participated in the discussions.
Read the online discussion in full here.