Patient and public engagement

The engagement and involvement of patients and members of the public in research, teaching and learning is an integral part of the way the FBMH works.

Involving a range of different people in our work provides opportunities for unique and valuable insights, and can lead to more effective, creative, meaningful and credible ways of working.

Social responsibility projects

Following two new funding calls – SR in the Curriculum and Engaging our Communities – project information, together with contact details, is now available to view.

SR in the Curriculum projects

Name	Dr Stephanie Snow
Title	Stroke, Self and Brain
Audience	Stroke survivors, medical students, clinicians
Summary	This project is to expand work into current medical teaching curriculum using art workshops with stroke survivors where Medical students and clinicians can engage with patients and carers. Students to produce a short video of the workshops giving them the opportunity the develop public engagement skills. This video will then be used in curriculum teaching and also be used to pilot other work such as dementia, MS and Parkinson's disease
Main contact	Emmanuel Pinteaux

Name	Dr Caroline Sanders
Title	Developing a culture for PPI in research for undergrad med students
Audience	Undergrad medical Students , PPI partners
Summary	To enable understanding of the rationale for PPI in research what it is (and is not) & how to do high quality in PPI in clinical and applied health services and public health research. An introduction to PPI seminar event. Podcast and online resources to be made available.
Main contact	Caroline Sanders

Name	Dr Sara Tai
Title	Division of Psychology and Mental Health
Audience	People living with mental health difficulties, medical students
Summary	Providing students with "real world" experience of the contexts in which they are applying research, theory and practice learnt on the course. Helping to develop reflective, responsible and employable graduates by interacting with people with lived experience of mental health difficulties. The plan is to invite two external speakers contribute to a two-hour lecture.
Main contact	Sara Tai

Name	Dr Ellen Poliakoff
Title	Parkinson's Disease from Inside Out
Audience	Medical students, PPI volunteer
Summary	Highlight the relevance of PPI/E in both teaching and research. Students able to participate in the filming and editing of PPI volunteer living with Parkinson's. Students to write short reflection pf their experience and with their permission to be shared in newsletters/blogs/websites. The film can be used in lectures in future years.
Main contact	Ellen Poliakoff

Name	Dr Julia Humphreys
Title	The Manchester Medical School Personal Excellence Pathway in Medical Humanities
Audience	Medical students
Summary	This project enables students to explore the theoretical basis of medical humanities, whilst developing their talents for communication through art and music both in the classroom and paediatric wards of Manchester Royal Infirmary. This involves community engagement by working alongside the Lime Arts charity, also cultural engagement via an annual field trip (previous trips have included the Royal Exchange Theatre).
Main contact	Julia Humphreys

Name	Dr Rhona Macleod
Title	Understanding the patient's experience of genomic counselling; novel filmed teaching material for postgraduate education of healthcare professionals
Audience	Medical students and patient-lived experience of genetic condition
Summary	To deliver a patient experience teaching aid of approximately 30 minutes, comprising of a Chinese patient talking about their experience of having a genetic condition and their experience of clinical genomic services in China. The video would be used as a teaching aid for both online and face-to-face teaching.
Main contact	Rhona Macleod

Name	Dr Catherine Lawrence
Title	Enhancing the students awareness of the patient experience
Audience	Final year medical students
Summary	The unit aims to provide an extensive knowledge of the role of inflammation in the nervous system, both in health and disease, including epilepsy, Alzheimer's disease and stroke. Students learn about fundamental mechanisms involved in disease but are disconnected from "real life". This project is to expose students to the "real clinical situation", encouraging "engaging with communities". Able to ask questions with patients living with Alzheimer's and life after a stroke.
Main contact	Catherine Lawrence

Name	Dr Nick Grey
Title	Preparing dental students to lead a socially-responsible and sustainable dental and oral health care system
Audience	Undergraduate dentistry students and external guest speakers/representatives of outside agencies (ie dentists, NHS officials, dental charities, researchers and representatives of dental public health programmes)
Summary	This project aims to go beyond the immediate demands of the dental curriculum and facilitates initiatives that encourage undergraduate students to experience the sense of social responsibility in order to integrate in their dental practice. Two workshops involving groups of students and team members to prepare for the event (Social Responsibility Day). The project would expect to students to learn and consider how dentists can act in a socially responsible manner. To enthuse students to volunteer and work with a local charity and coach nursery nurses, so that they will be confident in running activities aiming to prevent poor oral health in children. To create video-clips illustrating student’s opinions in relation to Social Responsibility (SR) and Sustainable Development (SD) and to share them on the School's website.
Main contact	Nick Grey

Name	Dr Joanne Pennock
Title	My research, your disease: Patient involvement in healthcare science research
Audience	Medical students and patients
Summary	Workshop Structured morning session for students to prepare for patient dialogue to include research case studies, role play, group discussion and Q&A prep for the afternoon. Structured afternoon session to give 6 patients the opportunity to share their stories.
Main contact	Joanne Pennock

Public Engagement projects

Name	Ben Ryan
Title	Widening Participation to Medicine Conference
Audience	Sixth form students from lower socio-economic background Manchester Outreach Medics
Summary	Widening participation event for 6th form students from lower socio-economic background to consider a career in medicine. Event to be held at Royal Preston Hospital Education Centre. Participants given the opportunity to take part in lectures and activities on the topic of medicine and given the opportunity to deliver a presentation. The presentation to be delivered to Manchester Outreach Medics team or other medical professionals. Benefits : to gain insight into the world of medicine, improve presentation skills, build confidence. The project aim is to introduce and encourage young people from less affluent areas.
Main contact	Ben Ryan

Name	Mukosa Tengenesha
Title	African Caribbean Society BME Mental Health Week
Audience	Students, local community and guest speakers
Summary	Create more spaces for the discussion and exploration of the concept of mental health within the minority groups, dissecting how it may affect them differently. Show and investigate how mental health can be viewed through a variety of mediums and perspectives, allowing people to see the effects of and understand mental health in more interactive ways.
Main contact	Mukosa Tengenesha

Name	Laura Hemming
Title	Forensic PPI - how does it work?
Audience	Researchers and clinicians PPI forensic experts
Summary	Within forensic mental health research, users of the criminal justice system (CJS) are often overlooked in more mainstream Patient and Public Involvement (PPI) initiatives. This project aims to adopt a pioneering approach to PPI that seeks to involve CJS service users within the applicant’s forensic mental health pioneering approach to PPI that seeks to involve CJS service users within the applicant’s forensic mental health research programme. Specifically, this project will seek to establish a forensic PPI group with the aim of drawing on their lived experience to inform the applicant’s study, which is a qualitative exploration of how prisoners experience their emotions and how this relates to suicide and aggression. Following their involvement, PPI group members will be consulted to evaluate their experience of engagement with the research. This will form the basis of the creation be consulted to evaluate their experience of engagement with the research. This will form the basis of the creation how to utilise forensic PPI within future research endeavours.
Main contact	Laura Hemming

Name	Dr Rebecca Farrington
Title	Female Genital Mutilation (FGM) community awareness Day
Audience	A multidisciplinary audience is expected, comprising professionals, volunteers, community members (especially the settled refugee population), and Manchester’s student body.
Summary	Greater Manchester is a hotspot for FGM practising communities in the UK despite it being illegal. Health and social care workers now have a legal obligation to report the practice, but many remain unsure about its origins and impact. It is a difficult and often sensitive subject that isn’t spoken about widely.
Main contact	Rebecca Farrington

Name	Professor Ann Caress
Title	Exploring the Potential of Dance to Promote Activity Maintenance in People with Chronic Obstructive Pulmonary Disease (COPD) and their Informal Carers
Audience	People with COPD and their carers
Summary	COPD is a very common lung condition which causes progressively worsening breathlessness. Over time COPD can impact on an individual’s mobility, impair their quality of life and cause social isolation. Levels of COPD in Greater Manchester are exceptionally high. There is good evidence that staying physically active can slow down the progression of COPD and improve well-being.
Main contact	Ann Caress

Name	Dr Dawn Edge
Title	Reflections on service user, carer and community involvement in co-producing Culturally-adapted Family Intervention (CaFI) with African-Caribbean people
Audience	Local and national black and ethnic (BME) communities and the wider public Mental health and social care professionals in the NHS Local government Charities
Summary	The National Institute for Health Research (NIHR) funded a three-year study to culturally-adapt an existing family therapy for African-Caribbean people and evaluate whether African-Caribbean service users, their families and healthcare professionals find CaFI helpful and culturally-acceptable. African-Caribbean people fear, mistrust and have poor experiences of mental health services. To make co-production and testing this new ‘talking treatment’ feasible, it was crucial to partner with community members, actively involving them in every aspect of the research. This involved agreeing research questions in community conferences and focus groups, developing the grant as co-applicants and collaborators, being members of and chairing research management and advisory sub-committees, and disseminating findings at conferences.
Main contact	Dawn Edge

Future funding opportunities

For general enquiries relating to future SR funding opportunities please contact CEI@manchester.ac.uk

Researchers

For advice on arranging payments for public contributors, see our payment guidance
To view, add or edit details of your engagement and involvement work, visit the engagement and involvement project database (UoM login required)

The following sections contain useful links for researchers who'd like to involve patients in their research or take part in engagement activities.

Guidance

Resource	Link
How should I plan my budget? Budgeting for involvement: Practical advice on budgeting for actively involving the public in research studies	Read more
How can I estimate the costs of public involvement? How to estimate the costs of public involvement	Read more
What is the impact of public involvement in the ethical design and conduct of research? Public involvement in research: impact on ethical aspects of research. This resource provides examples of the impact of public involvement in the ethical design and conduct of research.	Read more
When is ethical approval required? Public involvement in research and research ethics committee review	Read more
Where can I find more about public and patient involvement? A PPI Good Practice Handbook for UK Health Care Regulators	Read more
How can I use social media to actively involve people in research? Guidance on the use of social media to actively involve people in research	Read more
How does public involvement add value to research? How public involvement ‘adds value’ to commissioning research	Read more
What do I need to know about running public engagement events? Advice and documents required for public engagement events	Read more
How do I evaluate public engagement activities? A guide for evaluating public engagement activities Public engagement: Evaluation guide	Read more Read more
Where can I find examples of PPI in primary care research? Public and patient involvement: Case studies in primary care research	Read more
How should I reimburse members of the public who are involved in my research? A guide for making payments to members of the public actively involved in NHS, public health and social care research	Read more

Other resources

Resource	Link
Patient and public involvement: A resource for researchers	Read more
National Institute for Health Research: Going the extra mile Improving the nation’s health and wellbeing through public involvement in research	Read more
Mental health researchers’ TOOLKIT for involving service users in the research process	Read more
Provision for Public Engagement: Ten Common Pitfalls	Read more
An evaluation of the process and impact of patient and public involvement in the advisory groups of the UK Clinical Research Collaboration	Read more
Working Together: A toolkit for health professionals on how to involve the public	Read more
National Institute for Health Research - Patient and public involvement in health and social care research	Read more
The EDGE tool: self-assess your support for public engagement. This tool allows you to assess your institution’s support for public engagement. You can access a guide to how to use the tool here	Read more
The endocrinologist - Let's talk about hormones: how to succeed in public engagement	Read more

Networks

North West People in Research Forum

The North West People in Research Forum is devoted to supporting patient and public involvement (PPI) and public engagement (PE) in health and social care research in the North West of England.

Research Design Service North West

The Research Design Service North West (RDS NW) is funded by the National Institute for Health Research (NIHR) as part of a network of regional Research Design Services in England.

The Research Design Service provides advice on research design to researchers in the North West who are developing proposals for national, peer-reviewed funding competitions for applied health or social care research.

The National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care

The National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (NIHR CLAHRC) Greater Manchester is a partnership between providers and commissioners from the NHS, industry, the third sector and The University of Manchester.

Collaborations for Leadership in Applied Health Research and Care (CLAHRCs)

The 13 Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) are funded by the National Institute for Health Research and undertake high-quality applied health research focused on the needs of patients and support the translation of research evidence into practice in the NHS.

CLAHRCs are collaborative partnerships between a university and the surrounding NHS organisations, focused on improving patient outcomes through the conduct and application of applied health research. They create and embed approaches to research and its dissemination that are specifically designed to take account of the way that health care is increasingly delivered across sectors and a wide geographical area.

Engagement@Manchester

Are you interested in public engagement? Do you want to meet other like-minded people at the University? Would you like to hear some inspiring ideas?

Manchester Minute Lectures - YouTube

Short Youtube clips that aim to communicate latest advancement in research to the public.

Watch now

Life Sciences Series - YouTube

UoM researchers discuss their work.

Watch now

Patient Research Ambassador Initiative (PRAI) - YouTube

Patients act as research ambassadors to promote the importance of PPI.

Watch now

National Institute for Health Research TV - YouTube

Video on PPI

Watch now

Health Education England - YouTube

Nursing Careers and Care Pathways - Patient and Public Involvement

Watch now

Guy's and St Thomas' NHS Foundation Trust - YouTube

This video provides a good example of patient involvement.

Watch now

NHS R&D Northwest The Big Comedy Shop - YouTube

This video clip is the output of a workshop led by the Big Comedy Shop to explore the use of comedy in communicating about research.

NHS R&D North West are funding further workshops to enable research groups in the North West to explore comedy as a mechanism for public engagement with research.

Watch now

Medical Research Council - What is patient and public involvement? - YouTube

This film explores how patients and the public can work together with doctors and researchers on clinical research. In this short film, three patient representatives talk about their experience of being involved in clinical trials.

Watch now

Engagement@Manchester - YouTube

Watch now

Films@Manchester - YouTube

This film explores how to involve older people in research to develop efficient age-friendly communities.

Watch now

Journal articles

BioMed Central has established a new, open access journal called Research Involvement and Engagement.

The journal showcases the latest research into the involvement and engagement of patients and the wider public in health and social care. The journal is co-produced by all key stakeholders, including patients, academics, policy makers and service users.

View the journal here

Other publications

Crocker, J.C., Boylan, A.M., Bostock, J. and Locock, L. (2016) Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK‐based qualitative interview study. Health Expectations. Available at http://onlinelibrary.wiley.com/doi/10.1111/hex.12479/full
Dudley, L., Gamble, C., Preston, J., Buck, D., Hanley, B., Williamson, P., Young, B. and EPIC Patient Advisory Group (2015) What difference does patient and public involvement make and what are its pathways to impact? Qualitative study of patients and researchers from a cohort of randomised clinical trials. PloS one, 10(6). Available at http://dx.doi.org/10.1371/journal.pone.0128817
Brett, J., Staniszewska, S., Mockford, C., Herron‐Marx, S., Hughes, J., Tysall, C. and Suleman, R. (2014) Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expectations, 17(5), pp.637-650. Available at http://onlinelibrary.wiley.com/doi/10.1111/j.1369-7625.2012.00795.x/full
Esmail, L., Moore, E. and Rein, A. (2015) Evaluating patient and stakeholder engagement in research: moving from theory to practice. Journal of comparative effectiveness research, 4(2), pp.133-145. Available at http://www.futuremedicine.com/doi/abs/10.2217/cer.14.79
Davies, R. (2016) What is going on in public involvement in health research? A qualitative exploration of aims, processes and outcomes. MPhil, University of the West of England. Available at: http://eprints.uwe.ac.uk/28686
Becket, G., Wilson, S.E., Greenwood, K.J., Urmston, A. and Malihi-Shoja, L. (2014) Involving patients and the public in the delivery of pharmacy education. The Phamaceutical Journal, 292(7813) p.585. Available at: http://eprints.hud.ac.uk/26245/
Staniszewska, S., Brett, J., Mockford, C. and Barber, R., 2011. The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. International journal of technology assessment in health care, 27(04), pp.391-399. Available at: https://www.ncbi.nlm.nih.gov/pubmed/22004782

You can also download a list of Journal and Blog articles [pdf]

Research User Group

Centre for Musculoskeletal Research

The Centre for Musculoskeletal Research (CfMR) User Group (RUG) is a group of lay individuals who have an active interest in musculoskeletal health, either living with a musculoskeletal condition themselves or caring for someone who does.

Patient Safety Translational Research Council (PSTRC)

The Greater Manchester PSTRC has a number of ways for patients, carers and members of the public to get involved in its research.

Impact Psoriasis – RUG

This Research User Group advises the IMPACT research team on various aspects of their research studies specifically investigating different areas of research into psoriasis; this includes both the physical and psychological side to the condition.

PRIMER - Primary Care Research in Manchester Engagement Resource

This is a patient, carer and public involvement group working collaboratively with primary care researchers

Liverpool Women’s NHS Foundation Trust – Research User Group

The Trust’s Research User Group was founded in 2009 to ensure that the views of members are taken on-board to both improve the quality of research studies as well as making sure the work is useful, relevant and of high quality.

Group members can become involved in various stages of the research process from identifying, prioritising and designing projects, to analysing, interpreting and cascading results. The group is open to all regardless of age, gender, race, ethnicity or disability.

Teaching and learning

See a list of engagement and involvement resources for teaching and learning staff at Manchester.

Guidance

University of Nottingham (2012) Involving Service Users and Carers in your Teaching, a practical guide
Patient and public involvement in undergraduate medical education. Advice supplementary to Tomorrow’s Doctors (2009)
Patient Information Forum (PiF): toolkit to support the creation of high quality health information

Networks

DUCIE network: Developers of User and Carer Involvement in Education (DUCIE)
DUCIE aims to enhance the involvement of users and carers in learning and teaching through development of a support network for user and carer involvement development workers employed within UK higher education institutions (HEIs).
COMENSUS: Service users and carers in higher education, University of Central Lancashire
Comensus involves service users, carers and the wider community in scholarly activities and has been developed to embed service user and carer voices within health and social care practice.
The Lived Experience Network (LEN), Leeds Institute of Medical Education (LIME)
A network of people with a shared interest in patient & public involvement in higher education, who aim to develop an alliance of people with lived experiences, students and staff in health and social care education.

Films

Patient stories – this site uses digital, broadcast and social media approaches to provoke debate about quality issues in healthcare and have been used to positive effect in undergraduate teaching and learning.
Healthtalk.org – provides free, reliable information about health issues, by sharing people's real-life experiences, eg Teaching for undergraduate palliative medicine.

Journal articles

Basset, T., Campbell, P., and Anderson, J. (2006) Service user/survivor involvement in mental health training and education: overcoming the barriers. Social Work Education. 25, (4), pp. 393-402.
Chambers, M., and Hickey, G., (2012) Service user involvement in the design and delivery of education and training programmes leading to registration with the Health Professions Council. Kingston University, London. pp. 1 - 158.
Flanagan, J. (1999) Public Participation in the Design of Educational Programmes for Cancer Nurses: A Case Report. European Journal of Cancer Care. 8. pp. 107-102
Khoo, R, McVicar, A., Brandon, D. (2004) Service user involvement in postgraduate mental health education. Does it benefit practice? Journal of Mental Health, 13, (5), pp. 481-92.
O’Keefe, M. and Britten, N. (2005) Lay participation in medical school curriculum development: whose problem is it? Medical Education. 39, pp. 651–652.
Spencer, J., Godolphin, W., Karpenko, N., and Towle, A. (2011). Can patients be teachers: Involving patients and service users in healthcare professionals' education? The Health Foundation. p.p. 1 – 78.
Towle A, Bainbridge l, Godolphin W et al. Active patient involvement in the education of health professionals. Medical Education 2010;44:64–74.

Books

Mckeown M, Malihi-Shoja L, Downe S. Service user and carer involvement in education for health and social care. Chichester: Blackwell Publishing; 2010.