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Patients Involved – Psoriasis

Introduction

Collaboration between patients and a Psoriasis Association representative with the ‘Focus on the Patient’ division from GSK, to understand the impact of psoriasis on the lives of patients, their own views, and future clinical study endpoints.

Description of the case

Our Biopharm Discovery Medicine plus the Commercial Strategy teams working on developing a topical treatment for psoriasis sponsored a series of seven separate face-to-face patient interviews with the objective of:

  • A greater understanding of the impact of psoriasis on the lives of patients.
  • Patient view of device design concept.
  • Future clinical study endpoints.

These interviews were held at GSK Stevenage Medicines Research Centre from Dec 2012 to Jan 2013 and conducted by a GSK doctor. Topics discussed were diagnosis, living with psoriasis, how patients are treated, problems with existing treatments and a discussion about the potential device and dosing techniques. Each interview was video-recorded as well as observed by one member from each sponsor team.

This insight was required at an early stage in the research and discovery phase before the novel device was further developed and to confirm that indeed the device concept would appeal to patients.

Type(s) of patient (advocates) involved

  • Patients with personal disease experience.
  • Expert patient / patient advocate with good expertise on disease but little R&D experience.
  • Expert patient / patient advocate with good expertise on disease and good R&D experience.

Benefits of patient involvement

Understanding psoriasis from the patient’s view point has influenced our program team and strategy moving forward. Hearing the impact of disease on day-to-day life really motivated the team to develop new medicines for psoriasis.

A number of important observations about psoriasis were drawn from this activity and patients raised many practical questions about the new treatment ideas which we talked about. This was one of the most useful outcomes from the interviews; these are exactly the kinds of questions we need to answer during our clinical trials.

We now understand for which patients such a device would be most suitable. Feedback on the device has also influenced the design and new prototypes are currently being evaluated.

Challenges and barriers

Due to the nature of the condition and its impact on an individuals’ confidence, the main challenge was identifying patients who would be willing to come forward and speak about their experiences. During this activity, we learnt that many patients with the condition hide away so in recognition of this we extended the time period for these sessions to allow more time for patient identification. Our intended sample was 8 to 10 patients; no specific selection criteria applied.

During our outreach to identify patients through various different channels, we encountered one patient organisation who due to their policy were unwilling to work with industry.

The patients we interviewed were glad they were involved and offered to help again the future.

Learnings

Allow more time for outreach and patient identification.

Greater and wider emphasis placed on the opportunity for patients and patient organisations to work with industry and the benefits this can bring to all stakeholders.

The patients involved wanted to know how their insight had informed GSK; thank you letter with high level summary of findings was sent to each patient.

A3-Psoriasis-V1.0

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