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20 at 20 Blogs

In celebration of our 20th anniversary, UK DCTN members share their reflections of the Network in this blog series.

Latest Blog

UK DCTN So Welcoming - Amanda Roberts

Amanda_RobertsUK DCTN is so welcoming.  Attending one of their meetings is like coming home.  Which is quite an achievement since there are usually a gathering of 30 people from all sorts of backgrounds around a large horse-shoe table.  Researchers, clinicians and patients, like me. 

Kindness, knowledge and focus on doing great clinical skin research is quite a heady mix.  And so inspirational for me when I joined both the steering group and executive committee in 2009, with another patient.  I knew so little about the way research is conducted or most of the 3000 (!) skin disorders. 

My lived experience centred around eczema.  More particularly around trying to make the lives of my boys better, more normal.  Which is why I helped in the setting up of the Nottingham Support Group for Carers of Children with Eczema (another one of Hywel’s initiatives).Driving excellence in research proposals has never come at the cost of a collegiate and supportive atmosphere. 

The UK DCTN is a place which welcomes trainees and seems to embrace the mission to widen those involved in producing an evidence base for skin treatments.  So they embraced us patients too.  Welcoming my inept contributions and helping to make me feel good about my role at the same time.  Nurturing my passion that research needs diversity of both participation and patient voice to generate meaningful outcomes which make a difference. Captivating discussions on members’ research proposals are always centre stage at meetings. For a patient it is really inspirational to hear the great and good in the dermatology world bending their minds to patient and carer needs.  I do not use the term “great and good” lightly either.  During my time with the UK DCTN I met so many of those whose expertise is well recognised and who absolutely care about us patients.Traveling has always appealed to me as a “perk” of joining a committee. 

Most of the meetings are in London (in non-covid times) and once a year the AGM is wherever the British Association of Dermatologists is having its annual meeting.  Virtual meetings have their uses and certainly came into their own during the lockdown – but a day out, journeying by train and meeting up with everyone almost has a party atmosphere and always with good food.Nourishing is such a good description of UK DCTN.  It nourished me, just as it nourishes everyone else within its organisation. It has an unbelievable 1000 members and reaches out with funding awards, fellowships and a journal club.   Twenty wonderful years and I wish them many, many more to come.

Previous blogs

Mentoring and funding - My journey with the UK DCTN - Dr Alia Ahmed

My journey with the UK DCTN started through the trainee mentoring scheme. I submitted a research idea to investigate the impact of psychological interventions on people with vitiligo.  Through working with a larger team of dermatology trainees, expertly mentored by Dr Jonathan Batchelor and Dr Rosalind Simpson, the ‘idea’ became a fully-fledged application for the UK DCTN themed research call in 2013.

We were delighted to receive the award that year for our exploratory work: Is psychological intervention better than standard care alone in the management of vitiligo? Feasibility work to assess the best intervention and run a pilot randomised controlled trial.

Knowing that our exploratory work was much needed and supported by the wider dermatology community represented by the UK DCTN was the catalyst we required! Having £10,000.00 at our disposal allowed us to conduct, present and subsequently publish our research. It was not plain sailing though! The process started in 2013 culminated in our publication in 2018. Having the funding to move our idea forward, although very welcomed, still required a coordinated team effort to tick the all important boxes along the way (I still remember presenting to the ethics panel like it happened yesterday!). Our hands were firmly held by stalwarts like Dr Carron Layfield, Prof Hywel Williams and Maggie McPhee and our mentors, keeping us in line and on target.

But what did I learn and what do I remember? The funding was used very wisely and spent on facilities for our patient participants and on the all-important hacks that would make our lives as researchers easier (like transcription services!). The hours spent on following this idea through cannot be financially compensated, but research I have learned, is a labour of love. As recent as a week ago, I was having discussions with a new research team, headed by another esteemed colleague (Dr Viktoria Eleftheriadou).  They will be using our results to inform what could be seen as the next stage of this important work. The themed call has given me a lot more than a kick start, following this experience I have maintained my close links with the UK DCTN as part of the trial prioritisation panel, trainee mentoring and most recently a journal club for trainees.  

Research is a quest, which has many definitions, but my favourite is ‘a usually adventurous journey made in search of something’. I am delighted to report that the journey continues!

My thanks to the research team: Professor Anthony Bewley, Dr Jonathan Batchelor, Dr Rosalind Simpson, Mrs Maxine Whitton, Dr Liz Steed, Dr Reena Shah, Dr Esther Burden-Teh, Dr Saibal Sanyal and Dr Chioma Ajaegbu. 

UK DCTN hitting the spot for acne - Dr Alison Layton

What a difference 10 years can make!

We recognise acne is the commonest inflammatory skin disease seen globally and although the prevalence is most common in adolescents, recent epidemiological data suggest it is starting earlier and lasting longer. We see so many people with acne who suffer a very profound negative impact clinically, socially and psychologically and there are still so many unanswered questions about acne pathogenesis and management. Despite the high prevalence and the burden caused by acne, 10 years ago, it was very clear that acne was not attracting the same amount of attention or research funding when compared to other inflammatory skin diseases. This made it challenging to help us improve our evidence-based approach to managing and improving outcomes for our patients. 

In 2012, the UK Dermatology Clinical Trials Network (UK DCTN) came to the rescue by supporting a themed call for Acne. This was the first ever UK DCTN themed call award and we were delighted as a team to receive 10K to help support a James Lind Alliance Acne Priority Setting Partnership (JLA Acne PSP). The Primary Care Dermatology Society also provided a valuable contribution. 

I am not sure we actually knew what we were letting ourselves in for as this process attracted 2310 participants and resulted in 6255 important questions about treatment uncertainties. The responses all required some careful sorting into themes and co-ordination with representation from all stakeholders to support voting. Again, the UK DCTN were there to support with Carron Layfield and others helping us to manage the workshops and identify the final top 10.  

So what has this achieved? - well, highlighting the most important treatment uncertainties from the JLA Acne PSP, allowed discussion to take place with the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC) and the Centre for Evidence Based Dermatology. This informed study ideas and as result, a number of important National Institute for Health Research (NIHR) funding calls became available to support acne related studies. These studies include an HTA supported clinical study Spironolactone for Adult Female Acne (SAFA) led by the fantastic team in Southampton. This has recently been completed, despite the pandemic, with results about to be announced!

An acne programme grant is underway and aims to develop and test an on-line intervention to support self-management and improve outcomes and reduce antibiotic use in acne. A further recent HTA themed call has been commissioned, this will support a dosing and safety study looking at oral isotretinoin for the management of severe acne. All these studies were developed with support throughout from the UK DCTN. 

The questions from the JLA Acne PSP have informed several publications including systematic reviews, which support better management and has helped the international Acne Core Research Network (ACORN) to recognise what is important to relevant stakeholders when developing core outcomes.   Acne guidelines have also acknowledged the JLA Acne PSP and have identified research areas that require further investigation. There is still much to do!

We all know good research takes time, but thanks to the UK DCTN we have a robust platform of questions to inform our thinking when it comes to selecting research questions about acne.  What a difference the generous contribution from the UK DCTN has already made to acne in the last 10 years - a big thank you on behalf of all acne enthusiasts involved in research and I know there are many people with acne who would say the same!

Reflections on the UK DCTN from Tanya Bleiker, past-president of the BAD 2020-2022

Tanya Bleiker

The BAD is delighted to celebrate 20 years of the UK DCTN which has played a crucial role in the development of UK dermatology research; improving access to clinical trials and addressing key questions which support the BAD vision of healthy skin for all.

Huge thanks to Professor Hywel Williams whose vision and energy has led to the success of this national treasure! He saw the importance of involving clinicians, nurses, patients and carers to identify the issues and ask every day clinical questions. Questions such as do we give penicillin post cellulitis, do silk clothing or water softeners for children with eczema make a difference, does doxycycline have a place in treating pemphigoid? Simple, yet important, questions that make a difference to the outcome of our patients and would not attract industry funding. Answers that save money for the NHS by reducing admission of people with recurrent cellulitis, by identifying cheaper but effective treatment options and by disinvesting in interventions not found to be effective. By addressing key questions and promoting collaboration the UK DCTN has successfully completed 12 national, independent, clinical trials and secured over £15 million funding. The support that the UK DCTN has from the UK dermatology community is overwhelming, the undivided respect and support of clinicians and the gratitude from patients involved.

Not only has the UK DCTN increased good quality independent clinical trials it has also developed and nurtured UK researchers for the future. Its clinical fellowships have encouraged and enhanced core understanding of clinical research. Many of these fellows are now consultant research leads in their respective departments and have developed their clinical areas of research and are leading their own research teams. This has greatly contributed to dermatology research being undertaken across all of the U.K. and encouraged many departments to take part in these essential clinical studies. Key people have come through the programme including John Ingram, Editor-in-chief BJD, who was one of the first fellows.

The work of the UK DCTN has improved access to research for all dermatology departments and we know that better research activity leads to better patient outcomes in a department. A 2022 research survey carried out by the BAD research subcommittee reported that although most of us agree with the statement ‘Research is every Dermatologists business’, most research active respondents have no funded research time. The commonest reason for not getting involved in research was not having enough funded time, something we must improve by promoting the benefit to patients of research and the need for time to do it.

The BAD and UK DCTN remain closely aligned and have worked closely from the beginning, starting from the initial meetings held at BAD (Willan) House in the early 2000s. Through on-going funding of the UK DCTN infrastructure the BAD supports and invests in what we see as an essential part of delivering UK research. The BAD are proud to support the UK DCTN to enable it to continue in its high quality, independent research whilst promoting research for all. Thank you to all the team at the UK DCTN

Hywel Williams reflections on why he started the UK DCTN 20 years ago  

2022HywelWilliams_photo

Three things stimulated me to suggest starting up a UK Dermatology Clinical Trials Network. The first was the mismatch between the dermatology research agenda and clinical practice. There was plenty of excellent basic research and placebo-controlled studies from industry for skin disease. But neither of these approaches seemed to deal with the everyday clinical problems and questions I would see in clinic about treatments already in use. Questions such as how does cryotherapy compare with topical salicylic acid for warts?, or how does topical imiquimod really compare to surgical excision for low risk BCC?, or does a strategy of starting treatment of pemphigoid with tetracycline reduce the serious side effects of oral steroids in the elderly? These are the sorts of important clinical questions that industry would never tackle because there is no profit to be made. Industry funded placebo-controlled studies of new products are a good starting point, but I always wanted to know how new treatments compared with existing treatments used well. 

The second reason for suggesting a UK DCTN was the principle of empowering front line clinicians and patients in identifying, prioritising, designing and delivering externally funded clinical trials. I have always been interested in hearing patients’ views about research priorities – long before “PPI” has become fashionable in UK clinical research. Patients such as Maxine Whitton would open my eyes to outcomes that are important to them like reduced noticeability of vitiligo patches rather than decreased pigmentation that can still look odd. Although UK academic centres were doing excellent work in prestigious centres, there seemed to be an absence of a joined up clinical research community. We are a small island after all, so why was it not possible to inspire the wider clinical community to engage in addressing uncertainties democratically? Many outstanding UK clinical consultants and trainees had higher degrees and a good research grounding, yet they found themselves overwhelmed in front line work and unable to progress studies that mattered to them. The late Neil Cox once told me “Hywel – I don’t have the time to lead clinical research but I would be very happy to take part in clinical trials led by others independent teams”. Those words validated my passion to set up something on a national scale. Indeed, our first studies of penicillin to prevent cellulitis recurrences were suggested by Neil. The rest of course is history. Delivery of UK DCTN studies was a struggle to begin with but was very enhanced by the establishment of the NIHR Clinical Research Network Dermatology Specialty Group which is still delivering key studies to this day. We were in the right place with the right ideas at the right time to take advantage of the excellent structures that the NIHR were developing at the time. 

The final reason for setting up the network was to try and raise standards of independent clinical dermatology research in the UK. As someone who also worked outside of dermatology leading the Trent Institute for Health Research and then chairing national funding panels including Research for Patient Benefit and the NIHR HTA Programme, I had a good idea of what was needed in to make a competitive clinical trials application. A step change in our design and application standard also happened when we started working collaboratively with clinical trial units such as the MRC CTU and later with the Nottingham CTU.  

The UK DCTN is a unique collegiate network that now belongs to all of you – I will be formally stepping down as chair after 20+ years in 2024, so I look to all of you to please look after the UK DCTN, nurture it and develop it. 

 

UK Dermatology Clinical Trials Network


Applied Health Services Research (building 42)
University Park Campus University of Nottingham,
Nottingham
NG7 2RD, UK

Email: UKDCTN@nottingham.ac.uk