References
Using patient and public involvement to identify priorities for research in long-term conditions management
Abstract
Background:
Patient and public involvement (PPI) is increasingly important in healthcare research. Although this is accepted at the level of individual research studies, it has been less well used in scoping fundamental research priorities. It has been suggested that patients with long-term conditions (LTCs) are well placed to influence research priorities in this area due to their accumulated experience of illness over time.
Aims:
To obtain PPI in research-priority setting for a group with a special interest in LTC research.
Discussion:
PPI representatives provided views on issues they thought required further research. The facilitators were able to move from the specifics of these ideas to identify cross-cutting research priorities.
Conclusion:
It was possible to determine broad research themes despite PPI representatives initially articulating identified issues in very specific terms. Facilitating a better understanding of the research process for PPI representatives would allow their contribution to be more effective. Implications for practice PPI should be considered at the beginning of the process when broad research priorities are considered and before the study design. This is particularly so for broad, non-specialty-focused research themes such as LTCs. More work is required to ensure the views of harder-to-reach groups are included in this type of PPI.
Patients with long-term conditions (LTCs) are well placed to influence the design, delivery and evaluation of services that they access over the duration of their illness and wellness because they bring to discussions the perspective of lived experience (Greenhalgh, 2009). Their involvement relies on patient and public engagement and involvement with empirical research that seeks to evaluate existing and planned services. In the UK specifically, pressure is intensifying from the Department of Health and Social Care (DHSC), policymakers, organisations associated with health care and those who fund health research for even greater patient and public involvement (PPI) (Newman et al, 2012; Locock et al, 2017; NHS Health Research Authority, 2020). PPI describes an active partnership between patients, members of the public and researchers in all aspects of the research process (INVOLVE, 2014). This can include identifying research priorities, the design of trials, data collection, analysis and dissemination of results. However, PPI can be challenging, due to the difficulties of engaging culturally diverse groups to undertake PPI, logistical and financial issues of attendance at relevant events, and the time burden of participation on PPI representatives (Ball et al, 2019).
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