Public Steering Group

NIHR School for Primary Care Research (SPCR) > Public Involvement > Public Steering Group

Purpose

Established in early 2024, the SPCR Public Steering Group supports the SPCR to make decisions related to public involvement and engagement from a public perspective.

Specifically the purpose of the group is to:

Inform and monitor progress against SPCR PPIE Strategy and holding the SPCR accountable to the delivery of the PPIE Strategy
Providing advice to support the SPCR to undertake high-quality public involvement and engagement activities
Reviewing PPIE processe
Strategically steering the direction of PPIE across the SPCR
Championing public involvement and engagement and the views of the public in SPCR Decision-Making
Championing equality, diversity and inclusion in all decisions and activities related to PPIE

To meet these aims, the Steering Group meets twice a year, with two representatives from the group attending SPCR Board meetings.

How we work together

Our co-developed Ways of Working document outlines how we intend to work together over the next 3 years and includes details of how the group will inform decision-making, training and development opportunities and support.

Our Ways of Working document will be reviewed regularly by the Steering Group.

Members of the SPCR Public Steering Group sitting around a table at a meeting

Who is involved

The Steering Group includes 19 members of the public with diverse backgrounds, experience and skills.

You can find out more about some of our Steering Group members via the short bios below.

I found PPI by ‘accident’ in 2019 by reading a tweet by the Carers Support Centre. As a carer the 2020 Covid pandemic was a challenge and during that time my husband’s health declined and he (and me as his carer) became housebound as he needed 24/7 care support. We fell through the cracks for support and restrictions due to Covid and so research became a way for me to learn but it soon became something I found a passion for. I now understand mental health has been something affecting my life since I was a teenager and joining PPI has given me a focus in the recent years. I also volunteer with North Bristol NHS Trust as a Patient and Carer Partner and with the Bristol and South Gloucestershire Carers Support Centre. I believe good PPI is listening to, learning from and sharing lived experience. I am passionate about raising awareness of carers and dementia as an illness not as part of old age.

I am involved with a variety of projects – health and social care, dementia, stroke, multiple long-term conditions as well as Trusted Research Environments and Secure Data Environments. PPI has given me many opportunities, chairing advisory groups, giving presentations on line and in person at conferences but also allowed me to build confidence and keep my brain active.
Caroline Smith is a freelance writer with more than 35 years of experience in journalism, now based in Golders Green. Over the years she has produced feature stories for magazines and newspapers, biographical essays for reference books, and medical and technical copy for a multinational pharmaceutical company. During the pandemic she co-wrote a music business memoir, and over the last three or four years has returned to a childhood passion: writing short fiction. She serves as co-chair of Community Outreach for the Hampstead Women’s Club.

Since the age of 14 Caroline has lived with a chronic gastrointestinal condition which has at times sidelined her career, but has also opened her eyes to healing from both the patient’s and physician’s perspectives and given her a bird’s eye view of healthcare systems in the United States, Sweden, and the United Kingdom. For the last six or seven years she has served as an Expert by Experience at UCL, sharing her experiences with both first and fourth-year medical students, and has worked in PPI and PPE with the Department of Primary Care Research and Population Health at the Royal Free Hospital. She hopes to use her experience and expertise as a patient and member of the public to provide valuable feedback for the SPCR Public Steering Committee.
I worked in the Medical Device Industry for 40 years in various roles. I have been both Clinical and Technical lead for various devices, in the treatment of Cancers and the area of Men’s Health.

I have Type 2 diabetes (diagnosed 14 years ago) Osteo Arthritis and gut problems relating to a Hiatus Hernia.

I do a lot of work with the NIHR, sitting on a funding committee panel (I4I) and also various special interest groups within the NIHR (Imaging, AI etc.). I am on the steering group of 2 studies (both diabetes related and I also do work as a Research Champion in the Oxfordshire area. I am a PPG member at my local practice. I am also working closely with the local Research Nurse based at the Practice. I am also involved in many studies as a participant.

My main areas of interest are research, the provision of services for people with Diabetes and inclusivity in its many forms.
My experience:

For the academic side I have done my masters in Economics, Statistics and mathematics.

From the public side some of the groups I am currently involved in include:

Public Adviser in Applied Research Collaboration North West Coast (ARCNWC)
Research User Group (RUG) in Kelle University
Member of Patient and public Advisory Group (PPAG) in Bio Medical Research Centre, Birmingham
Member of Public Advisory Group in Public Voice in AI
Member of Public Advisory Group for a medical Imaging Artificial Intelligence AI project.
Member of Ethnicity and Breast Cancer Patient and Public Group, Oxford
My interest: Involve in public engagement group discussions which bring together key individuals with expertise in mental health and wellbeing from academic, health and social care, third sector, community, and voluntary organisation, together with patients and public Adviser who have experience of mental health services.

As part of my role, I was also involved in Reviewing the latest ideas to improve public engagement and attend focus groups, conferences, reviewing funding applications.

I think I can contribute as I am able to bridge the gap between the public and researchers as I have done this in my previous public engagement knowledge. I am aware of the value of other viewpoints and can actively encourage their participation in the decision-making process. I can contribute by gathering information on trends and potential areas for improvement in patient and public involvement in biomedical sciences. I can work well with researchers, healthcare providers, and community stakeholders to build meaningful engagement projects because I am a team player.
My name is Jenny Richards. I live in Newquay in Cornwall and I’m from black Caribbean background.

I work as a Supportive stay Host, looking after somebody in my home after they stay in hospital.

I’ve been working in different areas of public involvement for the last four years and thoroughly enjoy it, one of my favourite parts is meeting new people from all over the country and having the same interest in wanted to make research open to everyone.

Few of my subjects have been dementia, mental health,end of life care, weight loss, working with the PAN group from Exeter University and being invited to the executive meetings. Plus many more different roles.

I have lived experience with arthritis, which I’m always interested to know more about my illness.

I’m always looking forward to check in my emails to see what new projects are coming.
Kate Hawley lives in Newcastle with two young children and her American husband, Scott. She was inspired to get involved in public and patient involvement caring for her best friend who passed away from a rare form of mouth cancer in her early thirties, leaving two preschool-aged children behind who are now Godchildren to Kate and Scott. As part of this cancer journey, Kate’s friend lost the use of her voice, and so the ability for Kate to amplify the patient ‘voice’ is even more poignant. She is now quite experienced in patient and public advocacy, sitting on numerous NIHR panels to assess PPIE input into funding applications and being part of Patient Advisory Groups in Cancer Research UK, the British Heart Foundation, NICE, NHS England and Great Ormond Street Hospital. She has recently been elected as a Governor to the Newcastle Hospitals NHS Trust. Outside of her health advocacy, she is a senior manager for the Forestry Commission and spends her time leading on government grants for woodland creation and management in Northumberland and Yorkshire.
I worked as a Welfare Rights Officer in Manchester Royal Infirmary and I found the place very interesting. I joined the Community Health Council – and then all its successors. I got a job working for the Socialist Health Association I got involved with the Universities later when one of my friends became a professor. Now I have retired I still do social security tribunals, mostly for children with autism and learning difficulties.

I am particularly interested in the use of healthcare data, public health and the political impact of research.
Experience as a patient/relative, through 3 generations of family and self, of most NHS primary care services, ambulance and emergency department care; and of some other secondary care services.

Variety of PPIE roles for HCRW and NIHR (inc funding panels for both), and studies funded by them as co-applicant (unsuccessful and successful!), study steering committees etc..PPIE member of the EMS999 Research Forum Board. The lay member of the Welsh Government’s data for health and social care research working group.

Interested particularly in emergency care (by whomever of wherever delivered), public health, safe and sustainable expansion of non-medical clinical roles and numbers, interaction between different parts of the NHS, social care, housing and third sector landscapes.
Currently I work in school for children with Special Educational Needs. I have a background in biomedical sciences (bachelor degree in pharmacy, MSc in Clinical Pharmacy and Pharmacology and PhD in Molecular Oncology). I have significant experience in cancer research and patient and public involvement and engagement (PPIE) in health research.

I always have had an interest to make a contribution to improve the treatment and care of people with different health conditions/diseases through involving patient and public in research. Hence I have been actively involved in PPIE work since more than five years in different capacities including Biomedical Research centre’s management board member, steering committee member in NIHR funded primary care research centre, working group member in different research projects at different universities. I often see the barriers that people with long term health conditions/diseases (particularly with disabilities, older generation, and minor ethnicities whose first language is not English) face to receive treatment that they need and so I am passionate about using my experiences to help researchers, funding bodies, policy makers and patients/public to make the research more effective, inclusive and diverse as inclusion and diversity in research is crucial to ensuring treatment and care are tailored to everyone’s needs.

I am passionate about co- production/co-development and embedding PPIE in different stages of research; from initial study design to final dissemination, and have several published papers as first author and co-author, in high impact journals.

In my personal life I am a parent of a child with autism so I have lived experience about how the lives can be of people living with long term health conditions/ diseases/neurodiversity, what matters most to them and how important it is to receive treatment and care that is effective, evidence based and easy accessible.
I’m Sally-Jane Davidge.

When Oxford University Hospitals became a Foundation Trust, I served as a public governor for the maximum 9 years, for most of which I was chair of the governors’ committee for Patient Experience, Membership and Quality. I am now a public governor of the Hampshire Hospitals Foundation Trust. I completed the Leading Together course, run by the Oxford Academic Health Science Network, and am involved in a number of their projects. I also advise Buckinghamshire Healthcare Trust on their communication with patients. For some time, I have participated in a variety of medical research projects as PPIE, representing patients and the public.

Having experience as a carer for a number of family members, I know how important the role of unpaid carers is. As a linguist, I am interested in ensuring that all communication with patients, their loved ones and carers should be clear, helpful and easy to understand. I am a disabled person myself, and am passionate about Equality,

Diversity and Inclusion for patients and staff, and about Health Equity for all. I feel it is important to champion those who are seldom heard, and also to make sure that those without access to digital technology are not disadvantaged in their healthcare.
Steve is a Lay member of the Haywood Foundation committee, the PPIE NIHR SPCR committee, the Engagement & Involvement group with Beth Johnson Foundation and the RUG with Keele Universities.

Steve also volunteers at major sporting events in various roles including accessibility management.

Steve is also an active committee member of the Ages and Stages theatre group involved in intergenerational projects in conjunction with the New Vic theatre and local community projects, he is also a member of Claybody Theatre community cast working alongside professional actors in various productions.

Steve is particularly keen on diversity, equality and opportunities for the unheard local communities and the older population.

Steve is a disabled person, having living experience of Osteoarthritis, Spondylarthritis and managing pain in order that he remains as active as possible and does not allow his disability from interrupting his daily routines.
Originally trained as a librarian, I worked in academic and public libraries during the 1980s. However, the majority of my career was spent within social care services, managing policy, performance and commissioning teams. I was passionate about evidence-based practice and was always keen to apply research knowledge to improve services. I also learned very quickly that co-production was a prerequisite for good commissioning of care services, and worked hard to develop links with service user and carer groups.

I retired early in 2020 to care for my mother and uncle, who both had dementia. Sadly, they both died during the pandemic. Since my retirement, I have become involved in a variety of voluntary work, including being a Trustee of my local Healthwatch, a Patient Safety Partner with a large health trust and a hospital befriender. I am also a member of my local GP Practice Participation Group and am involved as a PPI&E member in several different research projects. In my ‘spare’ time, I also help out at a local community cafe and enjoy spending time (growing and chatting) on my allotment.

I am especially interested in meaningful and diverse public and patient engagement that can ensure research will be applied to improve services. I think it’s particularly helpful for the public to be engaged in the dissemination of research findings and transfer of knowledge.
Tanjida is a dedicated advocate for patients and public involvement in healthcare. She is a steering group member for NIHR School for primary care Research .She is a PCIE for NIHR Policy Research Unit in Health and Social Care Workforce (HSCWRU) Kings college London.

She brings a unique perspective to her role as a PPI representative and has been involved in various health research projects and community health initiatives. She believes that by working together, we can create a more patient-centred and equitable healthcare system for all especially, for her community.