Public Involvement in Health Economics Research (TEAM PIHER)

Working with people and communities on health and care economics research.

We want to build a strong team looking at how Public and Patient Involvement and Engagement happens in Health Economics research. We want to find out what is happening now, and come up with ideas and plans for what to do next.

This work will take 18 months.

Plain English summary

Defining Public and Patient Involvement and Engagement (PPIE)

By Public and Patient Involvement and Engagement (PPIE) we mean involving patients, service users, carers and members of the public in the design, conduct, analysis and dissemination of research. This ensures their perspectives and experiences directly influence the research process, making it more relevant and impactful.

Why does this matter in Health Economics?

Health economics is about making healthcare affordable, easy to get, and fair. Health Economics is used in decisions about what health services and treatments people get and what they don’t get. So, it is really important. But some of it is also very technical and there has not been much attention given to how involvement is done in Health Economics research.

What is needed?

There is lots of training and guidance to help PPIE happen, but:

there is a lack of training and guidance specifically designed for PPIE in complex number-focused or technical research, like health economics.
research to bring PPIE into Health Economics research needs to be more joined up.

What we want to do

build a team of health economists, people with roles in PPIE, and public contributors to look at and understand what is and isn’t happening to involve public and patients in Health Economics research, and what is needed to help.
improve people’s understanding of PPIE in health economics research.
create PPIE resources especially for health economics.
offer training on PPIE to both health economists and patients and members of the public.

How will we do this?

training events where we can share our experiences of PPIE in Health Economics research. We will think together about what worked well, what could have worked better and how to build on this.
undertake a Scoping review of what has been done so far in terms of PPIE in Health Economics research. This will include trying to find everything that has been published in research journals and everything that has been written about PPIE in Health Economics research in other places.
look at what has changed since new guidance came out about PPIE in Health Economics research in 2022.

This will enable us to give suggestions and examples for other health economists, people with PPIE roles and public contributors who want to work together.

Who will we tell about our work and what we find out?

We will tell people we already know in our existing networks and through new collaborations. This will include:

•    patients
•    members of the public
•    carers
•    health economists
•    people with PPIE roles
•    local authorities
•    integrated care boards
•    healthcare professionals
•    health care decision-makers

Our next steps

We will use our work as a team and what we learn to apply for new research funding to further develop PPIE in Health Economics research. This will include:

exploring ways that public contributors could become lay Health Economics Champions.
building on our findings and ideas by taking, sharing and discussing them with patients and members to the public more widely.

Feedback from group work at the NIHR Economics Group launch event

Three questions were explored in the group work undertaken as part of the PPIE in health Economics Session held on the 13th October 2025 at the NIHR Economics Group Launch Event in Manchester:

what enables and hinders PPIE in health and care economics research?
what are the key priorities for moving PPIE in HE forward?
how would you like to see a community of practice develop?

What enables and hinders PPIE in health and care economics research?

Enablers of PPIE in health and care economics

Participants identified that patient and public involvement was important to identify different aspects and different perspectives. Meaningful involvement was more likely to be feasible where:

researcher(s) have a passion and belief
researcher(s) have connections to communities and PPI groups
public interest
involving patients and public early in the research lifecycle
funding and budgets for involvement in grants
engagement with third sector agencies exists
dedicated meetings are organised for this aspect
where PPIE is well embedded in the wider research team and grant

Potential future enablers
The groups identified activities or support that don’t currently exist but would be useful to develop to enable meaningful involvement. This included:

developing PPIE champions
forums for discussing PPIE practices
case studies by type and size of research
training
resources using creative methods
information about how to get the ethics/ethos right and protect your participants
links with people who can support
feedback

What hinders PPIE in health and care economics?

Language

the word “economics”.
wide issue of communicating in plain English to all stakeholders.
explaining “technical” bits.

Lack of adequate involvement of economists from the start of studies.

Lack of resources and time

competing demands.
funding for PPI involvement – how to ‘pay’ people?.
no planned approach/afterthought.
need to identify areas that could most benefit from PPIE.

Poor experience of health care puts people off being involved.

Lack of training for economists and public contributors.

Difficult to know target population representation/who to involve.

Concerns about lack of representativeness

difficult to know target population representation/who to involve.
accessing the “tight” people.
people might feel exploited.

Concerns about doing it properly (i.e. inclusive, co-production etc).

Privacy concerns about data.

Need to demonstrate “so what” for the implications.

How would you like to see a community of practice develop?

In terms of how participants would like to see a community of practice develop there was some overlap with the key priorities. Ideas for how the community of practice may work:

form a network to share knowledge and experiences.
online or in a virtual space because of lack of funding.
develop a LinkedIN group.
have a launch event.
publish a Health Economics letter – call to action.
explore if there is NIHR co-ordinating centre funding.

Ideas for what the community of practice may provide:

learning from statisticians/methodologists.
identify where PPIE is relevant and when PPIE is impactful.
develop ways of explaining core concepts (animations, toolkits etc).
correct terminology for the correct context.
getting feedback about best practice for different types of economic evaluation.
webinars by different types of economic evaluation (qual versus quali, primary vs secondary; HTA, policy evaluation) at all research stages.
sharing examples of what hasn’t been successful.
recognising health economics is more than cost effectiveness.
increasing PPIE skills could increase successful fellowship applications.
clarity on funding (not just rates but approaches and what is value for money e.g. your overall budget).
using PPI for policy making/dissemination policy workshop.
linking up with NGOs/charities.
include international perspectives.

Our team

Professor Tracey Sach, University of Southampton
Professor Hareth Al-Janabi, University of Birmingham
Annette Bauer, London School of Economics
Annie Hawton, University of Exeter
Kate Heneghan-Sykes, University of Southampton
Rebecca Kandiyali, University of Warwick
Sara McCloskey, University of Southampton
Kalpna Mistry, NHS Gloucestershire
Samuel Perry, University of Birmingham
Rachel Purtell, leader in PPI and service user
Phil Ruthen, Public contributor and a Lived Experience Coordinator
Professor Sophie Staniszewska, University of Warwick

We are working in collaboration with: