Case Study: Professor Hywel Williams

Prof Hywel Williams

Professor Hywel Williams

Professor of Dermato-Epidemiology and Director, Centre of Evidence-Based Dermatology, University of Nottingham

“I don’t actually think of the patients who work with us as PPI members: they’re colleagues, they’re people with good ideas. To me, they’re part of the team like the statistician or the qualitative researcher or the clinician. I don’t see a boundary. Patient and public involvement is essential, integral and natural to what we do.”

NIHR Senior Investigator Hywel Williams has involved patients and the public in his research for over 20 years and considers it to be an essential mechanism for bridging the gap between the researcher’s ideas and the reality of the patient’s experience.

Patient and public involvement (PPI) is a key feature in a wide range of Professor Williams’ activities. This includes initiatives to set priorities for research into various skin conditions, identifying patient-important outcome measures for eczema research and supporting a patient, Maxine Whitton, to become lead author on the Cochrane systematic review of interventions for vitiligo (a condition that causes white patches on the skin).

The NIHR Health Technology Assessment (HTA) programme-funded HI-Light Trial, which is about testing handheld ultraviolet devices for vitiligo, originated from a suggestion put forward by patients and clinicians working together in a James Lind Alliance Vitiligo Priority Setting Partnership. This was an exercise that developed out of an NIHR Programme Grant for Applied Research (PGfAR) coordinated by the Centre of Evidence-Based Dermatology. This input has changed the focus of vitiligo research from a hospital-based intervention treating the whole body to testing a treatment that can be used at home to repigment the visible areas on the hands and face that matter most to patients. Again in vitiligo, finding out how patients conceptualised successful treatment has led to the development of a new primary outcome measure of asking patients how noticeable their vitiligo is after treatment as opposed to the traditional measure of percentage of skin repigmentation. Patient involvement has also ensured participant information and recruitment materials for vitiligo studies are accessible and appropriate to people from different ethnic groups.

Professor Williams attributes a culture change in dermatology research to the involvement of patients. He suggests that in the past, research was dominated by basic science and the patient voice was rarely heard. Now he feels that there is greater acknowledgement of and response to the patient as the user of research.

The presence of patients on, for example, clinical trial steering groups, in network meetings and funding meetings reminds the
researchers to maintain their focus on the ultimate beneficiaries of the research.

According to Professor Williams there is still some way to go. He is aware of those within the clinical research community who are not yet comfortable with the notion of involving patients and the public. He says it can be helpful to observe a team which is confident about PPI, where patients are empowered to contribute and where adequate time and resource have been allocated to support this.

Professor Williams believes that when patients feel valued and respected while undertaking PPI activities, they become the greatest allies of the researchers and the most powerful advocates for the research.

“Good patient and public involvement comes from the top. If you’re the chair, phone your PPI reps before the meeting, meet up with them, make them feel relaxed, introduce them, bring them in. The chair must demonstrate that the patients’ opinions are valued and hopefully other researchers will pick that up and take it back into their work.”


Centre of Evidence Based Dermatology: http://www.nottingham.ac.uk/research/groups/cebd/get-involved.aspx

Projects: Interventions for vitiligo – Cochrane review: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD003263.pub4/abstract

Eczema outcomes project: http://www.homeforeczema.org/

Vitiligo PSP: http://www.lindalliance.org/Vitiligo_Priority_Setting_Partnership.asp

HI-light trial: http://www.trialsjournal.com/content/15/1/51

 

Post a Project Online →