"Bringing the patient voice into GlaxoSmithKline for educational, awareness and patient centred decisions within medicine development", presented by Kay Warner, Global Manager, Focus on the Patient, GlaxoSmithKline, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK

1. Bringing the patient voice
into GlaxoSmithKline
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• Kay Warner, Project Manager
• 6 March 2014

2. Strengthening the patient voice
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• To guide our research, it is essential for us to understand
what patients need and the significant impact our medicines
can have on patients lives
• To do this, 10 years ago GSK established the programme
“Focus on the Patient”
• This programme brings patients to GSK sites to speak
directly to our scientists, researchers, physicians and other
employees about their healthcare needs
• The main component of this programme is our awareness
seminars

3. Focus on the Patient mission
to humanise the work of GSK to enhance the
benefit we bring to patients through the
creation of better medicines and improve
patients’ experiences in GSK research.
which directly supports the GSK mission
and the patient-focus value within the Spirit
of GSK

4. Seminars – an overview
• Since 2004 delivered over 70 seminars on a wide variety of different
diseases
• Majority are global internal webcasts
• Events are centred around direct perspectives from patients, caregivers
and advocates, who bring to life what is like to live with an illness.
• Raise general awareness, place a human face on an illness and go far
beyond what we may read in written form.
• Disease overview and high level summary of the efforts in GSK to meet
patient needs
• Often we involve healthcare professionals and external experts in the
field.
• Question and answer session is always included so employees have an
opportunity to connect directly with patients
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5. Recent and future topics
In 2013 we held patient insight seminars on the following topics:
In 2014 our seminar program will focus on:
• Cancer care in Africa and our alliance with NGOs in the region
• Aplastic anemia
• Motor neurone disease
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•Neglected tropical diseases;
lymphatic filariasis and soil
transmitted helminths
•COPD
•Type 2 Diabetes
•Gene Therapy
•HIV
•Chronic Hand Eczema
•Duchenne Muscular
Dystrophy

6. Seminars and their impact
• Overall the seminar approach provides rich and varied
insight into the impact of disease, its burden and unmet
medical need.
• In addition we are able to enhance our existing knowledge
and broaden our understanding of disease
• Seminars are open to all employees and are video recorded
for ‘on demand’ viewing from the Focus on the Patient
community – note for internal use only
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7. Patient feedback
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8. Employee feedback speaks volumes...
• We consistently achieve very high satisfaction ratings for these seminars from employees,
who are inspired and motivated by these events.

9. More employee feedback...
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10. Beyond seminars...
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Patient involvement in research and development
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• Since 2010 the programme has been arranging patient
insight sessions directly for project teams in R&D
• The result has been patient involvement much earlier in the
medicine development process in disease areas such as:
– Early rheumatoid arthritis
– Vasculitis
– Systemic sclerosis
– Psoriasis
• This approach revealed insights for medicine development
and also helped shape our clinical research activities in
these areas.

11. Feedback on early patient engagement
“The patients we interviewed were hungry for a new medicine that would
allow them to feel well. They were genuinely interested in the cause of their
disease and trying to do what they could to help us develop new and better
medicines. This approach allowed me to take time out to talk with patients
and really understand vasculitis from their perspective. This was very special
as physicians are usually under time pressures to arrive at a clinical diagnosis
and treatment plan.” Caroline, Head of Discovery Performance Unit,
“The timing was perfect since we are working on one of our projects for
Scleroderma. Having a chance to meet with the patients ahead of this was
an excellent experience for me.
John, Discovery Medicine, BioPharm

12. Case study - psoriasis
• From December 2012 to January 2013 Focus on the Patient
partnered with Biopharm Discovery Medicine & Commercial
Strategy to gain:
–a greater understanding of the impact of psoriasis on the
lives of individuals
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13. Case Study – Psoriasis
• Individual interviews were held at GSK, each recorded and
covered the following:
– Diagnosis
– Living with psoriasis
– How patients are treated
– Experience with existing treatments
– Thoughts on new treatments, suggested dosing
• Discussion format not clinical study
• Purpose: To gain patient insight and perspective of a
disease, its impact on patients and carers. This will inform
disease understanding, trial design and advance
development of medicines that best meet the needs of
patients.

14. Outcome
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• Letter to patients thanking them for participation but also
outlining key collective findings and the value of their insight
• R&D considering next steps in light of this insight
• In June 2013 an event sharing the approach taken and the
benefit of this activity was held to encourage other teams to
consider activities of this nature
• Increasingly across the business there are more teams
looking to seek patient insight for a variety of different
reasons

15. The future of patient engagement
• GSK will continue to strive to seek the opinion of patients and
caregivers at various key time points and harness the value
this brings
• Focus on the Patient challenges R&D employees where
relevant to ask ‘where is the voice of the patient?’
• Generally across the industry and from all stakeholders
including regulators and patient organisations there is a
greater drive for increased patient engagement

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Thank you for listening