1. Patient and Public Involvement and Engagement in Research (PPIE)
Clinical Research Network
West Midlands
Patient and Public Involvement and Engagement in Research (PPIE)
Mary-Anne Darby – Head of PPIE
Healthwatch Staffordshire Advisory Board 16 August 2017

2. Overview of Presentation
The National Institute for Health (NIHR) and the Clinical
Research Network (CRN)
NIHR Clinical Research Network Patient and Public Involvement
and Engagement Strategy
CRN West Midlands PPIE Action Plan
Initiatives
Patient Research Experience Surveys and Patient Stories
Patient Research Ambassadors
Young Persons’ Steering Group *

3. The National Institute for Health Research
The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health & wealth of the nation through research.
It plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research.
Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world.
The NIHR is the research arm of the NHS.

4. The NIHR Health Research System

5. The Clinical Research Network
The Clinical Research Network (CRN) is part of the National Institute for Health Research (NIHR)
Is funded by the Department of Health
The CRN West Midlands is the largest of 15 local Networks across England with an economically and ethnically diverse population of around 5.6m
It makes sure that clinical research occupies the place it deserves to in the day-to-day work of the NHS across the West Midlands locality, including Trusts, primary care organisations and any other qualified providers of NHS services. 

6. The Clinical Research Network
It helps to increase opportunities for patients to take part in clinical research
Ensures that studies are carried out efficiently
Supports the Government’s Strategy for UK Life Sciences by improving the environment for commercial contract clinical research in the NHS in the West Midlands.
It provides researchers with the practical support they need to make clinical studies happen in the NHS, so that more research takes place across the region and more patients can take part.

7. CRN West Midlands Hosted by Royal Wolverhampton NHS Trust
Partner Organisations:
29 Trusts
22 CCGs: 950+ GP practices
3 Local Area Teams (LATs)
Public Health, Social Enterprises, Hospices, Prisons…..

8. CRN Workforce and Structure
The mission:
Supporting research to make patients,
and the NHS, better.
15 Local CRNs across England, each
delivering research across 30 clinical
specialties.
We support research by:
Funding and training ‘frontline’ staff
who conduct research
Providing people and systems to
support the timely and effective set-up
and delivery of studies.

9. Patient and Public Involvement and Engagement Strategy 2015 - 2020
Five Year Goals
Talk about research in the NHS
Make it easy for people to participate
Reach out
Connect with the public, healthcare professionals and partners
Support and value patient and public involvement and
engagement

10. CRN West Midlands PPIE Action Plan 2017 - 2018
Planned Actions
To increase the lay representation and involvement in the activities of the CRN West Midlands
To increase the opportunities for people to participate and get involved in research
To raise awareness of research amongst patients, carers, the public and healthcare professionals
To collate feedback from participants and staff about their experience of being involved in research
To provide learning and development opportunities for patients, carers, the public, lay representatives and staff

11. CRN West Midlands PPIE Initiatives
Patient Research Experience Surveys and Patient Stories
Patient Research Ambassadors
Young Persons’ Steering Group

12. Patient Research Experience Surveys
A requirement for the Network to conduct an annual patient research experience survey
In 2015/2016 the Network took part in a national pilot survey
A number of questions were developed that could be used in future surveys
2 core questions (plus free text) were also developed for use in all surveys to allow national analysis
Clinical Research Network West Midlands Young Persons’ Steering Group has developed questionnaires for Children and Young People

13. Patient Research Experience Surveys
9th January – 10th February 2017
21 NHS Trusts and Primary Care participated
Overall 577 responses
Talk through slide

14. Patient Research Experience Surveys
Question
National
CRN West Midlands
I would be happy to take part in another research study
(5 point scale/ Agree and Strongly Agree)
86%
88%
I had a good experience of taking part in the research study
(5 point scale/ Strongly Agree)
56%
75%

15. Patient Stories
The ‘Patient Voice’ helps to raise awareness of research amongst patients, carers and the public
Patients have the opportunity to give something back and share their experiences
Educates both members of the public and health professionals about research
Patient Stories can be used on social media and in Newsletters and Campaigns
Benefits organisations’ research activity

16. Patient Stories Pack Pack Contents Introduction Example Story
Level of Involvement
Consents/ Assents
Example Questions

17. Examples of Patient Stories

18. Patient Research Ambassadors
What is a Patient Research Ambassador?
A Patient Research Ambassador is someone who
promotes health research from a patient point of view.
They could be a patient, service user, carer or lay person
who is enthusiastic about health research and willing to
communicate that to other patients and public as well as
healthcare professionals.

19. Patient Research Ambassadors
Types of Patient Research Ambassadors (PRAs)
1) People with a passion for research in General (Generic PRAs)
For example – people may want to gain an overview of how the NHS care organisation makes choices about research available to patients and work with staff to identify where improvements can be made
2) Patients, with experience as a patient or carer (Specialist PRAs), with a passion for research into that Specific Condition
For example: They may work with a particular department such as Neurology or Intensive Care

20. Patient Research Ambassadors
Help to raise awareness of research to patients, carers and the public e.g. via events and health awareness days and by supporting initiatives such as NIHR ‘I Am Research’ campaign
Advise on and help to collate surveys to assess the quality of patient research experience
Lay membership of a local research and development group or committee
Speak to local special interest groups about research
Be a resource for patients, carers and the public thinking about taking part in research

21. Young Persons’ Steering Group

22. CRN West Midlands Mary-Anne Darby
Head of Patient and Public Involvement and Engagement in Research –
Telephone –
A lot more initiatives – could talk for longer - Would like to draw your attention to leaflets – Join Dementia Research, ‘I Am Research’ and patient stories postcards.
If you require further information please contact me.