"Researching information needs and beliefs of patients, professionals and the public regarding medicines development", presentation held by Bella Starling on 6 March 2013 at DIA EuroMeeting

1. Researching information
needs and beliefs of
patients, professionals
and the public regarding
medicines development
Bella Starling PhD
WP3 leader, EUPATI 25th Annual
Director of Public Programmes EuroMeeting
Nowgen, University of Manchester 4-6 March 2013
RAI, Amsterdam
Netherlands

2. Where do we start?
• Phase one
– Review of existing information resources on medicines development
– Literature review exploring patient and public knowledge,
understanding and beliefs of medicines development and incentives
and barriers to involvement
• Phase two
– Focus groups with patients and the public, health professionals, policy
makers and pharmaceutical industry representatives to explore their
perspective on medicines development and patients‟ information
needs
• Phase three
– Survey of patients associated with patient organisations in Europe to
explore their information needs and preferences for type of
information resource

3. Resource review
• A „snapshot‟ of existing resources
– Over 300 submissions via EUPATI website
– Range of stakeholders submitting material
– Categorisation: scientific topic area, audience, format, language, etc
– Recommendations for EUPATI content development
www.patientsacademy.eu/index.php/en/network/138

4. Resource review - results
Medicines Personalis Drug Pharmacoeco Design Patients roles Other
developmen ed and safety and nomics, and and
t process predictive risk benefit health objective responsibiliti
from medicine assessmen economics or s of es
research to t of novel health clinical
approval or existing technology trials
medicines assessment
Patient 5 0 3 5 5 6 1
advocates
Expert 1 1 1 16 1 1 3
patients
Patients at 74 21 77 13 65 42 6
large
Total 80 22 81 34 71 49 10

5. Resource review - results
Medicines Personalis Drug Pharmacoeco Design Patients roles Other
developmen ed and safety and nomics, and and
t process predictive risk benefit health objective responsibiliti
from medicine assessmen economics or s of es
research to t of novel health clinical
approval or existing technology trials
medicines assessment
Patient 5 0 3 5 5 6 1
advocates
Expert 1 1 1 16 1 1 3
patients
Patients at 74 21 77 13 65 42 6
large
Total 80 22 81 34 71 49 10

6. Resource review - results
Medicines Personalis Drug Pharmacoeco Design Patients roles Other
developmen ed and safety and nomics, and and
t process predictive risk benefit health objective responsibiliti
from medicine assessmen economics or s of es
research to t of novel health clinical
approval or existing technology trials
medicines assessment
Patient 5 0 3 5 5 6 1
advocates
Expert 1 1 1 16 1 1 3
patients
Patients at 74 21 77 13 65 42 6
large
Total 80 22 81 34 71 49 10

7. Recommendations
• Medicines development process: adapt existing overviews,
tackle specific areas in more detail;
• Personalised and predictive medicine: few resources;
difficult area for patients to interpret.
• Medicines safety and risk-benefit assessment: adapt
pharmacovigilance resources aimed at health professionals
• HTA: few resources for patients; more needed.
• Design & objectives of clinical trials: focus on specific
aspects eg. how research priorities are established;
• Patient roles & responsibilities: scope for a range of
resources
• Something to submit? Contact kay.j.warner@gsk.com

8. Literature review
• Systematic keyword search across databases, 2002-2012
• Knowledge of areas: What do people know/not know?
Facilitators/barriers to increasing awareness and
understanding.
• Attitudes and beliefs & what influences these?
• Role of information and training in increasing
awareness and involvement: Types of information and
training; uptake and impact.
• Methods of raising awareness and their impact
• Methods of increasing patient and public involvement:
what works and what doesn‟t work?
• Stages that patients and the public would like to get
involved in and why

9. Focus groups/interviews
• In England, Spain & Poland:
3xFG Patients, patient advocates
2xFG Members of the public
1xFG Health professionals, policy makers and advisers
1xFG Pharmaceutical professionals
• + Pan-European FGs associated with
EUPATI events

10. FG preliminary findings
Patient advocates beliefs about their roles in relation to
research and to medicines development
• Multi-faceted role – including involvement in research
• Varying degrees of readiness, ability and willingness
• Support and training needed for all stakeholders in
medicines development
“I think that we should try to become more partners (with pharmaceutical
companies) … because I think that the reason why we are so sceptic about
them, and everything, is because we don’t understand them. And we don’t
trust them. And the thing is that, until we actually really can talk to them in
their own… or in the same level… then we will feel more confident to
actually do things together.”

11. FG preliminary findings
Patient advocates – information needs (1)
• Information should be:
– Accurate and up to date
– Quick and easy to navigate
– Developed by a credible source
– Quality stamp – impartial, trustworthy information
– Jargon free
“From different sources but with no real links and connections and
agendas, interests, conflict of interests. That if EUPATI manages to have
this body of experts which could gain or obtain this information they
analyse it and then the ideal information which is due to be disseminated
and circularised then it’s what attracts the trust that EUPATI would be the
source of....”

12. FG preliminary findings
Patient advocates – information needs (2)
• More information needed:
– Science behind / scientific aspects of studies
– Benefits and risks of taking part in studies
– Empowering and supporting patients
• To become involved and engaged in medicines development
• To judge whether information is useful
– Transparent information about the results of trials
– Patient reported outcomes

13. FG preliminary findings
Patient advocates – training courses
• Expert level courses
– Intense, difficult to follow
– Prior preparation useful
– Guidelines for speakers
– Importance of refresher courses – rapidly changing area
• Case studies are useful:
– From basic research to post marketing
– Examples of successful/unsuccessful involvement in research
• e-learning + face-to-face
• Delivered by patient advocates + academia + experts
• 0-4 hours per week
• ~6 days/year for face-to-face, block of 2-3 days
• Over 1-2 years

14. Next steps
• Survey in April 2013
• 6 languages of EUPATI; April 2013
• Questions:
– Current knowledge of medicines development
– Information needs about medicines development
– Support to increase awarenes & involvement
• Targeting:
– Patient advocates & expert patients: via POs
– Patients & members of the public: through market research
organisations
• Reaching over 6000 people

15. Workpackage 3 team
• University of Manchester
• Bella Starling – WP3 lead
• Suzanne Parsons – EUPATI Project Manager
• Su Gwan Tham – EUPATI Project Assistant
• GlaxoSmithKline
• Kay Warner – WP3 co-lead
• Novo Nordisk
• Christine Mullan-Jensen – WP3 Deputy co-lead
• EGAN/GAUK
• Kim Wever
• Celine Lewis
• Amgen, Genzyme, Roche, AstraZeneca, VFA

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