Ensuring the Public are at the Heart of Knowledge Creation and Mobilisation

The guiding principles of prudent healthcare www.gofaliechyddarbodus.cymru www.prudenthealthcare.wales

Health and Care Research Wales National, multi-faceted organisation Infrastructure Funding schemes Funded and overseen by Welsh Government Supports translational research with a particular focus on applied and public health research prevention, detection and diagnosis of disease development and evaluation of interventions provision of health and social care services implementation of research findings into practice

Vision For Wales to be internationally recognised for its excellent health and social care research that has a positive impact on the health, wellbeing and prosperity of the people in Wales

Themes to focus engagement and involvement activity Health & Care Research Wales Strategic Aim: Ensure that public involvement and engagement is central to what we do and is visible in all elements of it Objectives: To ensure the public are central to health and social care research in Wales To put the citizen at the heart of creating new knowledge and putting new knowledge into practice It is our vision to create a culture whereby all health and social care research that takes place in Wales happens ‘with the public, for the public’ Guiding vision & principles for public involvement and engagement in research in Wales Themes to focus engagement and involvement activity Raising Awareness Public’s role in research prioritisation & agenda setting Embedding public involvement & changing culture Enhancing the evidence base Effective central support for involvement It is our vision that all health and social care research that takes place in Wales happens ‘with the public, for the public’. (want we want to achieve)   To help drive and achieve this ambition, a plan is required that operationalizes and draws together all of the proposed activities, actions and solutions that will enable us to move to where we want to be. Focusing on the public, researchers and health professionals, our programme of activity is centred on five themes: Public awareness  Public prioritisation and agenda setting Cultural change  Central support  Enhancing the evidence base Within each of these themes, activities and actions are proposed that comprise the things that we think need to happen and the things that we will put in place to achieve our long-term, overall ambitions for public involvement and engagement in Wales. (how we will achieve this)

The Importance of PIE Improves relevance of research to people’s needs and concerns Provides a different perspective Improves language and content of information and research measures Ensures methods proposed are acceptable and sensitive to potential participants Helps identify the best research topics Increases quality Increases participation

Public Facing Performance Indicators The number of events held across Health and Care Research Wales that are open to the public to attend Number of members of the Welsh population recruited to Healthwise Wales to help prioritise, influence and shape health and social care research in Wales The number of members of the public who have signed up to the Health and Care Research Wales Involving People Network The number of public opportunities offered across Health and Care Research Wales

Delivery Management Structure Health and Care Research Wales Board Public R&D Delivery Board NHS R&D Delivery Board Social Care R&D Delivery Board Elements of Health and Care Research Wales Infrastructure (e.g. external steering groups for centres and units, support centre implementation group)

Centres and Units Centres Units Ageing and Dementia Cancer Mental Health Population Health and Wellbeing Primary Care and Emergency Care Units BRAIN Diabetes Kidney

Impact of Research Cognitive stimulation for people with mild to moderate dementia Developed at Bangor University in the late 1990’s Effective in maintaining language, perception, thinking, reasoning, remembering and quality of life Has assisted thousands of people with dementia and their carers globally NICE states that Cognitive Stimulation Therapy or CST Groups should be made available to all people with mild to moderate dementia

HealthWise Wales Actively engages and encourages the public to be informed and involved in research Opportunities for the public to identify research priorities, get involved in designing studies and provide data for analysis Database of potential participants who can be contacted to take part in other research studies Cohort with regular follow up So, HealthWise Wales is a dedicated research programme for population health that will have a strong focus on public engagement and what it means to take part in a research study. There will be opportunities for the public to set the research priorities, get involved in carrying out the research, and provide data for analysis. Participants will be followed up at regular intervals to capture information on exposures and outcomes that are not available from routine sources, and also contacted to take part in studies that are relevant to them. Link to the SAIL database Our research program will have three areas of focus. to research methods for increasing public engagement in health and social care research. to get a better understanding of the multiple factors and epi-genetic mechanisms of influence on health and wellbeing, and to develop and test interventions to improve health and wellbeing in individuals, families and communities with a focus on the impact of bundles of interventions. www.healthwisewales.gov.wales 0800 9 172 172 healthwisewales@cardiff.ac.uk

HealthWise Wales 29 February 2016 launch Sign-up via website or telephone National campaign to promote participation Range of public engagement events planned Aims to recruit 260,000 people over 5 years Over 4,000 participants joined to date So, HealthWise Wales is a dedicated research programme for population health that will have a strong focus on public engagement and what it means to take part in a research study. There will be opportunities for the public to set the research priorities, get involved in carrying out the research, and provide data for analysis. Participants will be followed up at regular intervals to capture information on exposures and outcomes that are not available from routine sources, and also contacted to take part in studies that are relevant to them. Link to the SAIL database Our research program will have three areas of focus. to research methods for increasing public engagement in health and social care research. to get a better understanding of the multiple factors and epi-genetic mechanisms of influence on health and wellbeing, and to develop and test interventions to improve health and wellbeing in individuals, families and communities with a focus on the impact of bundles of interventions. www.healthwisewales.gov.wales 0800 9 172 172

Involving People Network Co-ordinated by the Health and Care Research Wales Support Centre’s Public Involvement and Engagement Team Members of the public from across Wales who are interested in working with researchers to improve treatments and care Network members have access to: the latest opportunities to get involved in research in Wales a wide range of training support with expenses and payment for time regular newsletters and bulletins support and guidance  02920 230457 research-involvement@wales.nhs.uk 

www.healthandcareresearch.gov.wales @ResearchWales