"Reaching out to communities - promoting equal access to opportunities for public involvement in research": Sue Wood and Philip Bell discussed why we need to involve a more diverse population in health research; what the barriers were that prevented involvement in research; how these barriers are to be overcome, and how to involve those that find it more difficult to have their voice heard.

1. The North West People in Research Forum
Philip Bell

2. The North West People in Research Forum
Sue Wood

3. Reaching out to Communities - promoting equal access to opportunities for public involvement in research
Aims of the workshop :-
Why do we need to involve a more diverse population?
What are the barriers which reduce or prevent access to opportunities for involvement?
How do we overcome these barriers and how do we involve those that find it more difficult to have their voice heard?

4. Why do we need to involve a more diverse population?
“The body of research evidence available to policy makers should reflect the diversity of the population”
“Research [should be] pursued with the active involvement of service users and carers ….including those from hard to reach groups..”
The Research Governance Framework 2005

5. Why do we need to involve a more diverse population?
Involve 2012 – Diversity and Inclusion, what’s it about and why is it important for public involvement in research
“Inclusion is about positively striving to meet the needs of different people and taking deliberate action to create environments where everyone feels respected and able to achieve their full potential”

6. Why do we need to involve a more diverse population?
Involve 2012 – Diversity and Inclusion, what’s it about and why is it important for public involvement in research
“we often find that those getting involved are the people who are the easiest to involve “
People who are used to being involved, with existing connections, free to volunteer their time and energy, who understand how research organisations work
White ethnic group
The usual suspects
Older
Higher socio- ecomomic class

7. Why do we need to involve a more diverse population?
Involve 2012 – Diversity and Inclusion, what’s it about and why is it important for public involvement in research
“”this creates a mismatch between those most affected by health and social care services and those opting to get involved to influence services and research”

8. The Barriers

9. Equality

10. Where people live

11. Communication Issues

12. Other Issues
Unwanted voices
Financial barriers
Complex impairments
Stigma
Confidence
Inadequate information
Self esteem
Upfront costs
Benefit Issues
Tokenism
De-valuing service users
Expenses

13. Group discussion:
How do we overcome these barriers and how do we involve those that find it more difficult to have their voice heard?
How do we provide opportunities for all ?

14. •Equality Issues - gender , age, ethnicity , culture, sexuality, disability, class
•Where people live – homeless, residential service, prisoners, travellers, rural areas, asylum seekers
•Communication Issues – deaf/blind, people who don’t communicate verbally, English not first language, people who don’t read or write, those who don’t use computers or the internet, jargon
•The nature of Impairments – people with complex and multiple impairments
•Unwanted voices – some views are more welcome than others to health care professionals
•Financial Barriers – upfront costs for travel, meeting preparation, expenses not paid, benefit issues
•External barriers - De-valuing service users/ tokenism, stigma, confidence and self- esteem, inadequate information about opportunities
(Beresford 2013 – Beyond the Usual Suspects )
The Barriers

15. Forum Contact Details
Forum Facilitator:
Melanie Chapman
melanie.chapman@researchnorthwest.nhs.uk
0161 242 1342
Forum website:
www.northwestpeopleinresearchforum.org
Twitter:
@nwpirf

16. Acknowledgements
The workshop was planned and delivered by public and professional members of the North West People in Research Forum Events Working Group, Training Working Group and the Forum Facilitator:
Sue Wood, Philip Bell, Cara Afzal, Melanie Chapman, Kath Hennell and Bella Starling.