Experiences of Patient and Public involvement in the Research Process Roma Maguire Senior Research Fellow Cancer Care Research Team School of Nursing and Midwifery University of Dundee

Why User Involvement? ‘The contributions of patients provide alternative views from the usual NHS staff perspective. Users are able to make judgements and observations based on their understanding of the condition and may have a different take on what health outcomes are important, that health care professionals and researchers may not have considered.’ (

What is User Involvement in the Research Process? ‘User or public and patient involvement in research means doing research ‘with’ patients and the public so they are not just participants in the research. This requires users to have a say in the decisions made about the research, so that the methods and outcomes are more appropriate to research participants and patient’ (National Institute for Health Research, 2010)

Who are ‘ the users’ ? ‘ The term user refers to patients, their carers and family members, as well as to members of the public and representatives from patient and charitable organisations. Other terms for users include service users and consumers’ (NIHR, 2010)

5 Principal Stages of User Involvement in the Research Process Development of grant application Design and management of research Undertaking of the research Analysis of research data Dissemination of research findings (NIHR, 2010)

Level of Involvement of Users Consultation – Researchers ask users for their views and advice on aspects of the research e.g. comment on research proposal (most common) Collaboration – Researchers and the users work together to make decisions (shared decision making) e.g. study steering group,. User led or controlled – The users make the decisions about research. User commonly the main applicant and researchers work alongside them. Various levels of involvement can occur at different stages in the research process

Development of grant application User perspective on research ideas – help focus question/s to one that reflects patients needs and therefore has a greater potential to benefit patient care Review research proposals – offer suggestions on how to improve them Identify what areas users can be involved in the research process Co-applicants (funding/ethics approval)

Development of grant application – issues to think about…. Users knowledge of the research topic? Training of users?

Development of grant application – issues to think about…. How do you access ‘users’?  Existing groups (NHS/Voluntary/ Charitable Organisations) Representative of patient population? Meeting when required or on a regular basis?  Organise a group – advertise etc.  Clinic areas – accessing users currently active in the system?

Design of research Identify areas where users can be involved in the study Inform design and content of information sheets, questionnaires, interview schedules etc Inform recruitment strategies – where, when, how to recruit patients Comment on ethical perspective of the proposed study Users understanding of research design issues – training?

Management of research Membership of study steering group - what is expected, how they can contribute Important description/agreement of collaboration in place – users understand what is expected of them/ commitment – number of meetings, time, duration Training and support

User involvement in undertaking research…. Data collection: Users involved in data collection e.g. focus groups, interviews Training issues – previous experience or need training on data collection techniques? Researchers need to acknowledge user as part of the research team Users interest in this role?

User involvement in data analysis…… Offer an interpretation of the data which may be different from the research team Identify gaps in the data which can lead to the development of further research questions How to involve users in data analysis:  Present ‘raw’ data to group – feedback and comment  Steering group – presentation of findings  Circulate lay summaries to patient groups, charities, patient forums – ask for comment and feedback/ their interpretation of the findings

Dissemination of research findings…. Comment on reports – understandable to ‘lay’ reader Suggestion on where to disseminate findings of the study – who to contact, how to contact them, what format? Optimise dissemination Participate in presenting findings of research and experiences of being involved in the research process

NIHR PRINCIPLES OF USER INVOLVEMENT (2010) Plan user involvement as early as possible Be clear about what users will be able to do Be clear about what users will not be able to do Ensure all staff understand the reasons for involving users and attend training where necessary Support users with training and information

NIHR PRINCIPLES OF USER INVOLVEMENT (2010) Identify a key person within the research team for users to contact As a minimum reimburse users’ travel expenses Where possible offer childcare/carer expenses/cover other incurred costs (telephone calls/stationery) Acknowledge users’ input, feedback on the research and what you feel their contribution meant Ask for users’ feedback on their experience of being involved so you can make improvements for next time Ask users if they would like to remain involved if other opportunities are available

Further information