By Professor Rebecca Lawton – Director of the NIHR Yorkshire and Humber PSTRC
The experiences of patients are increasingly being sought by health and social care organisations and, perhaps less frequently, used to make improvements.
These experiences come in different forms – as ratings on questionnaire items, informal feedback sought by staff or stories volunteered by patients and their families. Care Opinion provides an opportunity for the latter. This not-for-profit organisation provides a platform for unsolicited stories, reflecting both positive and negative experiences of care that are written and directed to the organisations providing that care.
This interest in the views and experiences of patients and families, and opportunities for their involvement in their care, has also been the subject of a growing number of research studies over the last decade, with broad categories of work including shared decision making, participatory forms of design such as experience based co-design, patient reported process and outcome measures.
In a new endeavour, the NIHR Yorkshire and Humber Patient Safety Translational Research Centre is collaborating with Care Opinion to bring these two agendas together, to create new opportunities for patients and carers to be involved in research.
In 2019 we asked over 500 people who had written a story on Care Opinion whether, in principle, they would consider volunteering to be part of a “research community”.
Of the 163 people who responded to this survey, the majority were very positive about being involved in research. Nearly all respondents felt that healthcare research was important (99%). They also agreed or strongly agreed (96%) that taking part in healthcare research improves healthcare and that Care Opinion authors may have experiences that would help research (96% agree or strongly agree).
Care Opinion authors also had some opinions on how they should be involved. They expressed a wish to be able to opt in or out of being asked to help (96%) and that they should be able to see the type of organisation they are being asked to work with, before deciding (97%). Knowing about the expected time commitment (90%) and knowing how their information is safeguarded 76%) was also important to respondents.
Using this information Care Opinion, with support from Yorkshire and Humber PSTRC, has enhanced its online platform so that story authors can be invited to join the research community and state their preferences for the kinds of involvement they would want.
Our plan for the next few months is to test this out with a small number of studies within the PSTRC which are currently recruiting patients as participants. We will continue to develop the system and once we are confident that patients and researchers are happy with the way things are working, we will begin to share this opportunity with other research groups who might also find it valuable.
Of course, there will be many discussions and perhaps some glitches along the way and this approach to participating in research won’t suit everyone. There will also be questions, as yet unanswered, about the representativeness of the research community on certain characteristics such as education, socio-economic status, age, gender and ethnicity. We will need to learn and share as we go along.
We are very excited about this new and open approach to widening research participation – and learning how we can offer people who have already shared online feedback additional ways to help improve health and social care services through research.