Our Patient and Public Voice (PPV) Panel is made up of representatives from across the East of England and East Midlands region. They bring a range of experiences of genetic testing and their own established networks.
The response to our PPV Panel recruitment has been very encouraging, with lots of great applications received. On this page we are pleased to introduce our 8 PPV Panel members, including our Chair Chris Hind.
What is the purpose of the PPV Panel?
The PPV Panel will develop projects and collaborate to:
- Ensure patient, family and carer voices are heard at a senior levels within, and inform decision making across, East GMSA.
- Hold open discussions about the challenges and opportunities for genomics in the region.
- Reflect patient, family and carer experiences and priorities through review and input into East GMSA business planning and development of genomic services pathways in the NHS.
- Consider and address barriers to equity of access and experience of services across the region.
- Raise awareness of genomics and its potential impact amongst patients and the public, and share the experiences of people whose care involves genomics.
Meet our PPV Panel
Chris Hind and Eddie Blair
Chris Hind is our PPV Panel Interim Chair. He was on the Norfolk and Waveney patient panel for two years, is a Governor of the Norfolk and Norwich University Hospital, and sits on the Audit committee, Digital Transformation and Clinical Informatics boards. Chris is also on the Electronic Patient Records (EPR) project board for Norfolk.
Having been diagnosed with Genetic Haemochromatosis in 2018 Chris has a strong interest in genetic testing and research for all rare conditions and believes in a strong patient voice. He has experience in marketing, patient engagement, and PR and media.
East GMSA Working Group Membership: Lynch Syndrome Network, Informatics and Data, Pharmacy.
Eddie Blair is our PPV Panel Vice-Chair. A molecular virologist by training, Eddie has worked in infectious disease, oncology, liver disease and neurodegenerative disease. He has a strong interest in precision/personalised/stratified medicines through diagnostic testing, and a good understanding of pharmacogenetics (PGx) and pharmacogenomics (PGen), having run clinical trials incorporating PGx and PGen.
Eddie's has a specific interest in cancer (e.g. Lynch Syndrome, Prostate Cancer). He is a Board Trustee of the Quadram Institute in Norfolk, is a Steering Committee member for the UK Pharmacogenetics Network, and is an Assessor/Panellist for UK Research & Innovation.
East GMSA Working Group Membership: Cancer, Haematology, Oncology and Pathology, Informatics and Data.
Rebecca and Michele
Rebecca Middleton is a former broadcast journalist with 20 years of experience and expertise in international PR, corporate and crisis communications. An experienced patient advocate, she is Vice-Chair of the Genomics England Participant Panel (opens in a new tab) as well as a 100,000 Genomes participant.
Rebecca has sat on the oversight committees for two major public dialogue programmes examining public attitudes to genetics in newborn screening. Today she sits on the steering group of the Newborn Genomes Programme (opens in a new tab), a co-designed and NHS-embedded research study. Here Rebecca chairs a working group for the study which is looking at recruitment, branding, communication and dialogue with expectant parents and their families.
She is the Founder and CEO of Hereditary Brain Aneurysm Support (opens in a new tab), a patient-focused, not-for-profit rare disease organisation. HBA Support is a proud member of the Genetic Alliance, Gene People, Eurodis and Neurological Alliance.
East GMSA Working Group Membership: Communication and PPI, Medical and Rare Disease.
Michele Banton has experience in engaging black and minority ethnic communities, with particular connections to the Nottingham voluntary sector. She has involvement in setting up and managing new and innovative services, e.g. the Beyond Diagnosis project in partnership with Macmillan (opens in a new tab).
She has also helped to develop new models and pathways, including working within local Integrated Care teams on reducing emergency hospital admissions. She also has experience in health promotion and communication, notably a two year project to increase uptake of bowel screening.
Michelle brings expertise in staff and project management, as well as training and development and delivery.
East GMSA Working Group Membership: Communication and PPI, Cancer, Haematology, Oncology and Pathology
Steve and Tim
Steve Tyler a leader in the field of accessibility, particularly delivering innovation and solutions that bring about accessibility to people with disabilities to mainstream products. He is Director of Assistive Technology at Leonard Cheshire (opens in a new tab) where he has responsibility for policy, support and implementation of assistive technology solutions, services and innovations inside and outside of the organisation.
He has influenced web standards, app development standards, has been influential at global electronics regulatory mechanisms, works on policy and legal issues around disability and accessibility, and, as a person with a visual impairment, is an advocate in his own right.
Steve collaborates with key players in the technology market as part of the Google Accessibility Strategy Board, the Microsoft accessibility steering group, and as a programme lead for the annual M-Enabling Summit held in Washington DC.
East GMSA Working Group Membership: Medical and Rare Disease, Informatics and Data.
Tim Roe worked for 40 years as a veterinarian. He brings to the panel good comprehension of medical terms and strong interpersonal skills. He also brings the patient perspective on clinical pathways and care, having had a long-term connection to hospital protocols after serious health issues.
Tim has particular interest in prostate cancer.
East GMSA Working Group Membership: Cancer, Haematology, Oncology and Pathology.
Vaila and Helen
Vaila Morrison is an Architect/Inclusive Designer who also works in social media, graphic design and communications.
She is parent/carer of a child with an ultra rare condition (KAT6A Syndrome) who had a long diagnosis journey, finally getting a genetic diagnosis via the DDD Study (opens in a new tab). Through this Vaila has experienced the challenges of navigating services from a Learning Disability/neurodiverse perspective as well as physical access.
Vaila brings to the panel experience of community consultation in her various guises (architectural, community projects, rare disease). She is part of the Cambridge Rare Disease Network (opens in a new tab) (and a member of their Unique Feet Community group, for which she does freelance social media and communications work).
Vaila and her family have been members of Syndromes Without A Name (SWAN) UK (opens in a new tab)for the past 10 years, and she is also a member of Cambridge Children’s Hospital's Children’s Network (opens in a new tab).
East GMSA Working Group Membership: Medical and Rare Disease, Nursing and Midwifery, Communication and PPI.
Helen Canning was a secondary school science teacher for 15 years before her career came to an end when she was diagnosed with stage 4 colorectal cancer (BRAF mutation) at the of age 38 in 2021.
Since being diagnosed with what is categorised as a rare form of colorectal cancer, Helen has come to believe that the patient voice is vitally important in medical research and development.
Helen is a a member of the East Of England Cancer Alliance (opens in a new tab), as well as a social media volunteer for Bowel Cancer UK (opens in a new tab).
Additionally Helen is a founding member of the campaign group Breaking BRAF (Instagram (opens in a new tab) and Facebook (opens in a new tab)), a group of UK-based BRAF colorectal cancer sufferers and carers who are determined to bring BRAF to the front of researchers and oncologists minds.
Karine and Loretta
Karine Latter recently retired from the NHS, having worked as a nurse for 45 years across clinical care, leadership, research and education. She has experience in cross organizational working, using research studies to inform practice and supporting patients and families with genetic testing.
Having been diagnosed with bowel cancer and Lynch Syndrome in 2020, Karine has a personal interest in using patient voices to inform service and patient experience improvement, particularly access to genetic testing, screening and outcomes.
Loretta MacInnes is a rare disease patient and parent, with lived experience of genetic testing, teenage to adult health transition, and the lack of support for young adults, particularly around mental health.
She has worked across private and public sector partnerships producing change across digital health, technology-enabled care, and enterprise. Loretta was also the Communications Lead for the NHS England 3millionlives initiative.
Loretta now runs her own website (opens in a new tab) and blog advocating for families with Fabry and other rare diseases.
East Genomic Medicine Service Alliance (East GMSA) has been set up to ensure all eligible patients across the East Midlands and East of England can access and benefit from appropriate genomic tests when required, providing high-quality and personalised treatment. East GMSA will ensure there is equal access to the nationally commissioned genomic tests set out in the National Genomics Test Directory (opens in a new tab), no matter where people live or which hospital they use, supporting the establishment of testing pathways for cancer and rare diseases, assisting clinicians in requesting genomic tests and introducing new models of care that support early access to genomic testing.
East GMSA is led by a Partnership Board representative of the four NHS Trust partners that have direct responsibility for delivering the service.
- Cambridge University Hospitals NHS Foundation Trust
- Nottingham University Hospitals NHS Trust
- University Hospitals of Leicester NHS Trust
- Norfolk and Norwich University Hospitals NHS Foundation Trust.
Working closely with the East Genomic Laboratory Hub (GLH), together with healthcare professionals, networks, alliances, academia and patients and public representatives across the East Midlands and East of England, the East GMSA will bring together the vital multi-disciplinary clinical leadership and other operational and digital functions that are necessary to embed genomic medicine into mainstream clinical care.