Today saw the publication of a new paper ‘Importance of involving patients and public in Health Technology Assessment (HTA) and health research in South Asia’ co-authored by the BU Public Involvement in Education and Research (PIER) Partnership . This paper is co-written with Dr. Bibha Simkhada, until recently Lecturer in Nursing in N4LTH Centre (Nursing for Long-Term Health) and now Senior Lecturer in Nursing at the University of Huddersfield, Dr. Aliya Naheed at icddr,b in Bangladesh, Angela Warren based at PIER, Dr. Sue Green (Principal Academic) and Prof. Edwin van Teilingen. The paper appears in the International Journal of Technology Assessment in Health Care, which is published by Cambridge University Press.
The authors highlights that Patient and Public Involvement/Engagement (PPI/E) in public health research and Health Technology Assessment (HTA) in has significantly increased over past decade in countries such as the UK. PPI/E helps improve health research and hence benefits patients and service users. For example, organisations like BU’s PIER bring a unique patients and (potential) users’ perspective of these services, which enables FHSS to enhance the education the future workforce in health and social care as well as research in this area.
However, PPI/E is still very new concept in many LMICs (Low- and Middle-Income Countries). This paper considers the importance of PPI in public health research and HTA in the development and implementation of technology in the health sector in South Asia. Currently, in this region, health technology is frequently adopted from HICs without local research and HTA. It also discusses the importance of local co-creation of technology to reflect the needs of users within a culturally appropriate setting. It is important for LMIC-based researchers to understand the potential of PPI/E and how it can contribute to it to improve health care and research, especially perhaps in the era of COVID-19.
- Simkhada, B., van Teijlingen, E., Naheed, A., Warren A., Green, S. (2020) Importance of involving patients and public in Health Technology Assessment (HTA) and health research in South Asia. International Journal of Technology Assessment in Health Care [Online First 5 November, pp. 1-3].
Within the Bournemouth University PIER (Public Involvement in Education and Research) partnership and the BU Research Centre for Seldom Heard Voices we have been re-evaluating the nature and purpose of PPI (what, why and how) in order to identify ways of broadening the models and approaches used by researchers. This stems from our on-going work to identify, pilot and evaluate models which have the most impact and which involve a more diverse range of voices in shaping and informing health and social sciences research. As part of this process we conducted a concept analysis drawing on published research where claims of PPI were made. As a result, we identified five operational definitions for conducting PPI. The five definitions which outline different models or approaches to conducting PPI, were: undefined involvement; targeted consultation; embedded consultation; collaboration and coproduction; and user led research. We deliberately avoided presenting these as a ladder or pyramid of involvement given the significant impact on the research cycle which can be achieved with each approach. The definitions provide a useful tool for researchers to consider how best to incorporate public involvement into their research and to consider what the impact of doing so might be. The paper is available for open accesss at https://rdcu.be/5uin Hughes, M. and Duffy, C 2018 Public involvement in health and social sciences research: a concept analysis. Health Expectations.
I was invited to present at Imperial’s PPI network this week to talk on the theme of inclusivity in PPI (public and patient involvement in research). In the PIER partnership and the newly formed Research Centre for Seldom Heard Voices, we are exploring challenges and opportunities for engaging seldom heard voices in PPI. The basis of our work is that those most affected by health inequalities often have the least opportunity to inform and shape health research. Beresford (2007:310) highlights that if diversity and the barriers that can be in the way of increasing diversity are not addressed, ‘participation is likely to be partial, and reflect broader social divisions and exclusions’ i.e. it will further reinforce health inequalities. This led to some great discussions within the PPI network. The main focus was whether we need to approach PPI differently to engage a more diverse range of voices. From our work at BU, we are finding that we need to think differently about who we involve and how we involve. Only a certain demographic of people will feel comfortable and confident engaging in focus groups, providing feedback on plain English summaries or voicing their opinions in formal settings. These methods and voices are valid but in our experience, are not particularly diverse. Our current work seeks to engage marginalised groups such as rough sleepers in PPI activities by creating outreach opportunities for researchers to ‘go to them’. As a starting point, we challenge the notion of ‘hard to reach’ groups. In our experience, marginalised groups are easier to locate and engage when collaborating with community organisations such as night shelters. The challenge is to change a culture of PPI which relies on the public ‘entering our world’ rather than us seeking a wider range of voices out in the community. It would be good to hear your thoughts and examples. Dr Mel Hughes, email@example.com