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

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 2015 - 2020 CRN West Midlands PPIE Action Plan 2017- 2018 Initiatives Patient Research Experience Surveys and Patient Stories Patient Research Ambassadors Young Persons’ Steering Group *

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.

The NIHR Health Research System

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. 

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.

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…..

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.

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

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

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

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

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

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%

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

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

Examples of Patient Stories

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.

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

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

Young Persons’ Steering Group

CRN West Midlands Mary-Anne Darby Head of Patient and Public Involvement and Engagement in Research Email – mary-anne.darby@nihr.ac.uk Telephone – 01902 447193 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.