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HEALTH campaigner Jules Sprakel and a team of five skin-related academics have presented a study on acne guidelines to a recent high-powered gathering of researchers, scientists, policy-makers, managers, consumers and activists.
The Global Evidence Summit in Cape Town aimed to advance the use of reliable research evidence in addressing the world’s most serious health and social challenges.
Jules said: “It was challenging at times, but the reward was bigger. I got to work with such a fabulous group of people with so much knowledge and talent, and I also became an author on my first big high impact publication. However, the biggest ‘take home’ is why this study is relevant. It reveals that guideline developers consistently overlook the views of patients.
“Only one of seven guidelines included a patient in the development group. Only one guideline sent the draft guideline to a patient representative for review. Guideline development should not be about patients, it should be with patients.”
The findings are free for all to read within the British Medical Journal of Dermatology: AGREE II assessments of recent acne treatment guidelines: how well do they reveal trustworthiness as defined by the Institute of Medicine criteria.
Acne, a chronic inflammatory skin ailment, is the eighth most prevalent disease globally. However, even though it’s common, accurate information about it can be scarce which can make it difficult for sufferers to get clearer skin.
Dermatologists know that letting acne run its course is not always the best advice because without treatment, dark spots and permanent scars can appear on the skin as it clears.
Treating acne often boosts a person’s self-esteem especially amongst teenagers that suffer bullying and ridicule for their peers. Also, a growing number of women are developing acne in their 30s, 40s, 50s and beyond. Dermatologists are not sure why this is happening but understand that adult acne can be ‘particularly frustrating’.
And while acne is treated by a wide range of care deliverers in a variety of settings and given the large number of treatments available, the team’s study highlights that suggested treatment is far from spot on and that there is a desperate need for Clear Unbiased Trustworthy (CUT) guidelines.
Jules and the team, including researcher Anne Eady and acne dermatologist Alison Layton from the Department of Dermatology, Harrogate & District NHS Foundation Trust in UK, patient representative Bernd Arents from Skin Patients Netherlands, methodologist Zbys Fedorowicz from Cochrane Bahrain and systematic review expert Esther van Zuuren from the Department of Dermatology of Leiden University Medical Centre in the Netherlands, rallied to distinguish between the different types of guidelines to identify those which are rigorous, transparent and free from bias to better treat the condition.
Jules is best known in the kingdom as the founder of breast cancer charity Think Pink Bahrain. She is also a specialist nurse and consumer advocate from the Department of Gynaecology & Obstetrics in Ribeirão Preto Medical School from the University of São Paulo, Brazil and Bahrain Breast Cancer Society.
She is currently in her first year as a PhD candidate whilst also being part of the steering committee and guideline development group in Bahrain for the National Breast Cancer Guidelines, being funded by the Think Pink: Bahrain Breast Cancer Society.
This initiative is being supported by the Supreme Council of Health under the vision of Shaikh Dr Mohammed bin Abdullah Al Khalifa and the National Health Regulatory Authority (NHRA) under the guidance of Dr Mariam Al Jalahma.
“With the workload and research within this project, and an offer of a PhD candidacy at the Department of Gynecology & Obstetrics, Ribeirão Preto Medical School, University of São Paulo, Brazil - it made sense to immerse myself into every aspect of the development process itself,” explained Jules. “This meant understanding the foundations of guidelines, development and the methodological tools of assessment.
“I have been fortunate to have great guidance in the form of Prof Zbys Fedorowicz - my local PhD supervisor, whom has been very inclusive and given me the push that I have needed to develop as a novice researcher.
“Having to learn all aspects of the guidelines we are producing in Bahrain, it was key to learn about the tool - AGREE II – and the development process itself so that I can safely and proudly stand by the work that will be produced and internationally endorsed.
“It just happened that a colleague of his in the UK was looking for support in accessing acne guidelines and I became one of six to support the assessment process.
“The inclusiveness was second-to-none, and they welcomed my perspective, questions and answers.
“This is very unusual in the research world, where research, too many sectors of the multidisciplinary team is deemed by be only a doctor’s remit. That analogy is long since passed, and current evidence based research proves that collaboration across and within the multidisciplinary team is best practice.
“Research should, and often now does, include the whole spectrum along with consumer advocates and most importantly patients. How do we expect our patients to follow procedures and or treatment plans if not with their buy-in and perspective?
“Healthcare providers rely on treatment guidelines as trustworthy summaries of clinical evidence.
“It is not always easy to distinguish between the different types of guideline - which may be evidence, opinion and / or consensus based - or to identify those which are rigorous, transparent and free from bias.
“Two previous critical appraisals which focused on evidence-based guidelines published up to September 2013 found them to be of variable quality.”
The research itself took seven months and consisted of critiquing eight international acne guidelines with the AGREE II tool- all done anonymously.
To identify any treatment guidelines published, the acne busting group conducted thorough searches which included Medline, Embase (09/13 – 12/16) and web based guideline depositories.
Six assessors, including one patient and one lay person, scored the guidelines independently using the AGREE II Reporting Checklist 2016. Each guideline was also assessed using trustworthiness criteria of the US Institute of Medicine & Lenzer et al’s red flags indicative of potential bias.
The checklist consisted of different categories such as scope and purpose, clarity, transparency and conflict of interest found in the US, Canada, Europe, South East Asia, UK and Spain.
Jules presented the project on behalf of the team in Cape Town and she also presented another project for which she is the lead author in relation to the breast cancer: Bahrain Evidence- based Guideline Initiative (BE. GIN).
This project received the blessing of the Supreme Council of Health and the National Health Regulatory and she represented the kingdom and the charity.
Around 1,400 people from 77 countries attended the first ever Global Evidence Summit.
