Our Steering Group

The Acne Priority Setting Partnership is overseen by a Steering Group comprising patient representatives, people who treat acne and experts chosen for their ability to help with specific tasks.   We are an eclectic mix of people who are committed to delivering a successful priority setting exercise which we hope will inform the direction of clinical research in acne for years to come. 

The Steering Group is responsible for co-ordinating and organising the various stages in the priority setting process.  The Steering Group includes and is led by the individuals who made the initial approach to the James Lind Alliance, namely Dr Alison Layton and Dr Anne Eady.  The organisation for which they both work, namely Harrogate and District NHS Foundation Trust, acts as the base for the priority setting partnership and provides infrastructure support. 

The James Lind Alliance offers facilitation and guidance to the Steering Group and provides the chairperson.  The day-to-day work is carried out by the other members of the Steering Group who are responsible for:

  • publicising the surveys to collect and prioritise unanswered questions about the treatment of acne,
  • sorting and grouping the questions submitted and checking to make sure they have not already been answered by research,
  • bringing the final top ten list of unanswered questions to the attention of researchers and those bodies which fund their work

Lester Firkins (chair)

Lester has been involved with the James Lind Alliance since its formation in 2004 in the capacity as Chair of their Strategy and Development Group and as an Adviser and Chair to many of the individual Priority Setting Partnerships.

Initially he was a career banker with Lloyds TSB and NatWest but left in 2002 after the loss of his eldest son Ellis to variant CJD (human form of Mad Cow Disease).  He then was Chair of the patient Charity and also Co-Chair of the first clinical trial for Prion Disease with Sir Iain Chalmers.  He also served on several committees and working groups with NICE, the Food Standards Agency and NETSCC.

The values of patients and clinicians and the regular absences of their contributions into the selection of research funding became a driving interest and hence involvement with the JLA.  In 2012 Lester was awarded the OBE for services to Medical Research.

Alison Layton

Alison is principle investigator for the Acne Priority Setting Partnership.  She was appointed as a Consultant Dermatologist at Harrogate and District NHS Foundation Trust in 1994 and holds an Honorary Senior Lecturer Post at Hull York Medical School. She has been involved in acne research for over 20 years and set up and delivers a dedicated NHS acne service which is currently unique in the UK.  Alison is a UK representative on international and European acne groups which have worked for many years to optimise acne management to improve outcomes for patients. Since her consultant appointment, Alison has been involved in a number of basic science research studies and has conducted many clinical trials on treatments on acne.

Acne remains the commonest inflammatory skin problem worldwide and yet attracts relatively little research funding.  By consulting with the public and health care professionals within this priority setting partnership there is a real opportunity to identify future research projects that will address the questions about acne treatment that matter most to people with acne and the wide range of professionals who treat them.

Julia Jordan

An MBA qualified chartered accountant, Julia worked for over 25 years in a variety of private sector and third sector financial roles and is now self-employed. She is one of the patient representatives on the Acne PSP Steering Group, having suffered from severe acne both as a teenager and adult and having been a regular service user.  She is particularly interested in research into self-management treatments and how these might complement conventional acne therapies. 

Mark Fenton

Mark started his working life as a Mental Health Nurse. He has since undertaken training in psychoanalytic psychotherapy, sociology, and epidemiology and has worked clinically in acute mental health inpatient units.  He then worked at the Centre for Evidence-Based Nursing at the University of York and the Cochrane Schizophrenia Group at the Universities of Leeds and Oxford.  He is also an editor with the Cochrane Schizophrenia Group.
For the last seven years Mark has been Database Editor of the UK Database of Uncertainties about the Effects of Treatments (UK DUETs) which was established by the James Lind Initiative, who are funded by the Medical Research Council and the Department of Health.
Mark is now employed by the National Institute for Health and Clinical Excellence (https://www.evidence.nhs.uk/and http://www.nice.org.uk/).
UK DUETs can be seen at http://www.library.nhs.uk/duets, and the James Lind Alliance can be seen at http://www.jla.nihr.ac.uk.

Chris Oxnard

Chris has a nursing background and has worked in the NHS for over 30 years.  She is the Senior Manager for the local clinical research network and is keen to understand the power of the "networks" as a driver for patient input into clinical research".

Nick Levell

Nick is a dermatologist who has worked at Norwich for nearly 20 years.  He has helped set up nurse led acne clinics in his role as a clinical director which have been shown in patient surveys to be popular.  Nick has wide ranging clinical research experience as a steering group and executive member of the UK Dermatology Clinical Trials network, as research lead in the Norwich dermatology department and NIHR dermatology lead for Norfolk and Suffolk.  He is now President of the British Society for Medical Dermatology having just been Honorary Secretary to the British Association of Dermatologists (BAD).  He is interested in guideline and patient information production and is active on the BAD Therapy and Guidelines Committee.   His first experience of acne research was as a 14 year old research study subject in Leeds, so understands just how difficult compliance with topical treatment can be for teenagers.  Having followed the work of the James Lind Alliance in the eczema and vitiligo PSPs, Nick is delighted now to be involved in this acne research.

Fiona Cowdell

Fiona is a Senior Research Fellow in the Skin Health and Skin Integrity Group, Faculty of Health and Social Care, University of Hull. She has worked as a registered nurse in clinical practice, research and education for many years. Fiona has a particular interest in long-term skin conditions and behavioural interventions to improve self-management. She was involved in the Eczema Priority Setting Partnership and was convinced that this approach is the most effective way to ensure that future research into acne will tackle the issues that are most important to people with the condition and those who provide care.

Matthew Ridd

Matthew is a part-time GP and Lecturer in Primary Care at the University of Bristol, with a research interest in the diagnosis and management of common skin problems.  In the surgery, acne is one of the most frequent skin complaints that he sees, yet he is aware of the lack of research to support which treatments he should advise patients to try.  He was recently involved in the Centre of Evidence Based Dermatology priority setting partnership exercise for eczema (another research interest of his), and was impressed with the value of this exercise in properly identifying what the most important issues are for patients and the clinicians who treat them. He believes that repeating this exercise for acne treatments will similarly help ensure that future research is meaningful to the people who will put the findings to use.

Maggie Peat

Maggie is a nurse and researcher.  She is Lead Research Nurse at Harrogate District NHS Trust and Patient and Pubic Involvement Lead for the North East Yorkshire and Northern Lincolnshire Comprehensive Local Research Network.  She is committed to ensuring that all people who use the NHS should have a say in how it is run and the services it provides.  Part of that service is making sure that all treatment given is the best that can be given – for that we need research which is relevant to everyone.  Her role on this project is to facilitate involvement of patients and public to ensure they are able to contribute fully.

Stephen Andrews

Stephen has been involved in informatics for many years and is currently a member of the Science Technology Medicine team at The British Library.  Recent biomedical projects have included UK (now Europe) PubMed Central and collaborations with Microsoft Research, the National Cancer Research Institute, National Institute for Health Research and universities such as Oxford, Manchester, Sheffield and the Karolinska Institute.  Stephen is also working with the research team at the Harrogate and District Foundation Trust, which led to his being involved with the Acne PSP.  His role on the Steering Group complements that of the other members and brings an additional dimension to the way in which such partnerships conduct their research.

Sophie Auckland

Sophie has 12 years’ experience of developing services and research with members of the public. While studying for her MSc in Social Research and Evaluation Methods, she developed a particular interest in participatory research, developing research with the involvement of members of the public to make the outcomes more meaningful and relevant for them.
She has a background in youth work management, developing programmes with young people to meet their support needs, and setting up the young peoples’ advisory group for the Royal College of Paediatrics and Child Health while working as the Youth Participation Manager there.  She currently leads on patient and public involvement (PPI) and engagement in research for the NIHR Biomedical Research Centre at Guy’s and St Thomas NHS Foundation Trust and King’s College London where her work includes training researchers and members of the public to work together, and more recently co-developing and teaching the Masters level module on PPI in research.
Sophie believes that the Acne PSP presents a great opportunity to involve a wide public audience in setting the research agenda for this area, in particular the involvement of young people.

Amanda Tapp

Amanda trained as a nurse at The Middlesex Hospital and currently works as a matron in a mixed boarding school in Kent.  She is responsible for the pastoral care of 60 boys, many of whom have spots/acne.  Through her job, Amanda is very aware of how self-conscious boys are about their skin and looks - just as much as girls.  Amanda has two daughters, both of whom have had acne.  Her older daughter underwent two uneventful courses of treatment with oral isotretinoin, her acne having relapsed after the first one.  Her younger daughter has less severe acne but absolutely hates it so decided, aged 21, to give isotretinoin a go.  Unfortunately, she developed very strange and out of character moods on the drug and had to stop taking it.  Amanda brings a wealth of personal and professional experience of the day-to-day realities of acne treatment to the Steering Group. 

Dr Mahendra Patel

Mahendra is an academic pharmacist and senior lecturer in Pharmacy Practice at the University of Huddersfield with a national portfolio. Mahendra's work with minority ethnic groups is recognised by the National Institute of Health and Clinical Effectiveness (NICE) which appointed him as one of its first Fellows. He is also an active member of the NICE Accreditation Advisory Committee for assessing guidance production. His passion and commitment to help address inequalities in health among minority ethnic groups has led him to him becoming Chair of the South Asian Health Foundation Working Group. Mahendra's professional credibility gained him his role as Consultant Pharmacist under the National Institute of Health Research (NIHR) in partnership with the Primary Care Research and Comprehensive Local Research Networks. This involves establishing a level of staff readiness to support high quality pharmacy-related portfolio research both locally and nationally, such as the Acne PSP.

Anne Eady

Anne is project manager for the Acne Priority Setting Partnership.  Originally a skin microbiologist, she has been involved in acne research almost all her working life, originally at the University of Leeds and now within the NHS.   Anne had acne that persisted into her thirties and has two children who have both suffered from acne.  She has been involved in many studies of acne treatments and is very aware how little input patients have had into the design or conduct of the studies or in deciding which studies should be done.  Anne learned about priority setting partnerships during a visit to the Centre of Evidence Based Dermatology in Nottingham in 2012.  The Centre has conducted two very successful partnerships in eczema and vitiligo.  Anne came away convinced that priority setting exercises provide a fair, transparent and well validated mechanism for ensuring that future research projects provide clear answers to the questions which are most important to people with acne and those who treat them.

 

Charlotte Jones

Charlotte joined us in September as one of the patient representatives on the Acne PSP Steering Group. She is a Fire Design Engineer, Managing the Technical Team within the Gaseous Suppression Department for a leading manufacturer in the Fire Industry. She is also a part time student studying MSc Fire and Explosion Engineering. Charlotte has had severe acne from an early age. Over the years, she has used many acne medications with varying degrees of success including a range of lotions and gels as well as several courses of oral isotretinoin. Although the active acne is now under control, the emotional and physical scarring remains.

 

Karen Thomas

Karen Thomas was born in 1962 in Holywood, Northern Ireland of a Welsh father and German mother. She attended Secretarial College, from which she joined the workforce as an administrator and typist in various offices. Later she entered the media, appearing on ITV1's “Unluckiest Faces in Britain” in 2003 where she had suffered from an extreme form of facial acne. Karen has had extensive experience working with the media in national television and radio, as well as, regional radio and printed press. Karen is also involved with the Cochrane Skin Group. In addition, Karen is currently Secretary of the Fenland Arts Association. You will find Karen on Twitter @KazThomas, Facebook, Sunzu and other social media platforms.