This guidance provides suggestions for how civil society organisations can work with health economics researchers to increase the visibility of seldom-heard groups in co-producing health economics research.
People from seldom-heard groups, who often face poor mental health and other disadvantages, can benefit greatly from investment to protect their mental health. Yet they are rarely involved in co-producing economic research used to inform policy and practice choices for mental health.
This guidance was produced in partnership with the Care Policy and Evaluation Centre (Department of Health Policy) at the London School of Economics.
There is a strong tradition of making use of economic arguments to inform mental health (and wider) policy and practice in the UK. Economic research can provide information on what works best, for whom, in what context and at what cost.
People from seldom-heard groups, with lived experience, both of poor mental health and other disadvantage, may benefit greatly from more investment in measures to protect their mental health, yet they are rarely involved in co-producing economic research used to inform policy and practice choices.
Civil society organisations are well placed to act as the bridge between professional researchers and seldom-heard groups to facilitate co-design and co-production of health economic research. These organisations can also benefit from health economics evidence that shows the value of their services.
As part of the co-design and co-production of health economic research it is essential to identify, from the perspective of seldom-heard groups, the key interventions to implement and which key impacts to measure.
Civil society organisations that bring together professional researchers and seldom-heard groups should ensure that peer researchers are paid and have the same opportunities as professional researchers to be authors of research findings.
Civil society organisations should be compensated for their participation and/or facilitation of coproduced research. In addition to covering any of their own researcher time, this includes financial (and potentially technical support) for data collection, as well as engagement with, and/or training, of seldom-heard groups.
Civil society organisations working with seldom-heard lived experience groups can facilitate health economic research by putting in place monitoring systems for the services provided. The information obtained can be used in future assessments of cost-effectiveness, and should include the resources used for service delivery, service uptake and sustained engagement rates, as well as information on different outcomes, such as those considered to be important to people with lived experience.
A database of civil society organisations that are willing to participate in research would help facilitate health economic research that is co-designed with seldom-heard groups.
Peer researchers and representatives of seldom-heard groups should be compensated for their role in the co-design and co-production of research.
Context
In this guidance, we use the term ‘seldom-heard’ groups to describe individuals who have lived experience of mental health challenges, discrimination, prejudice, or other forms of disadvantage. Too often, the outcomes used to assess the effectiveness and cost-effectiveness of mental health interventions are decided by professionals and researchers, without including input from those with lived experience.
Authors:
David McDaid (Care Policy and Evaluation Centre, Department of Health Policy, London School of Economics and Political Science).
Shari McDaid (Mental Health Foundation).
A-La Park (Care Policy and Evaluation Centre, Department of Health Policy, London School of Economics and Political Science).
Co-authors:
Zaina Aljumma, Cardiff City of Sanctuary
Dr. Hooshmand Badee
Anne Black, Braveheart Association
Gavin Davidson, Queen’s University Belfast
Sioned Ellis, Diabetes Scotland
Alanna Hagan, Refugee Sanctuary Scotland
Ann John, Swansea University
Folade Lawan, Leaders Unlocked
Alec Morton, Strathclyde University
Fatima Mohammed, SCOREscotland
Roque Neto, Central and West Integration Network
Ronald Tagwireyi
The Mental Health Foundation would like to thank the following for participating in a collaborative focus group to co-design and inform this report:
- The Foundation’s Young Leaders Group (hosted by Leaders Unlocked).
- Participants in Glasgow who attended our focus group in co-producing health economic research.
- McDaid D, Park AL, Davidson G, John A, Knifton L, McDaid S, Morton A, Thorpe L, Wilson N (2022). The economic case for investing in the prevention of mental health conditions in the UK, available at: www.mentalhealth.org.uk.
- See https://euroqol.org/.
- See https://innovation.ox.ac.uk/outcome-measures/recovering-quality-life-reqol-questionnaire/
- Some health states can also be considered worse than death and have a value below zero.
- See https://www.gov.uk/government/publications/mental-health-services-cost-effective-commissioning
- See Social Value Lab - "Gauging the social return from the Craft Cafe".