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www.sciencewise-erc.org.uk
Stratified Medicine: A
public dialogue case study
Reema Patel
Policy Analyst, Sciencewise
www.sciencewise-erc.org.uk
Recent advances in science allow us to
understand the underlying molecular
causes of disease.
This means that tests can understand the
cause of that disease, identifying new
treatments to be developed that target
those diseases more precisely.
This divides patients into ‘strata’ of those
expected to respond to a particular
treatment or medicine, and marks a
technique likely to prompt a cultural shift in
the way we ‘do’ medicine for the future.
Stratified Medicine – What Is It?
www.sciencewise-erc.org.uk
Public Dialogue on Stratified Medicine
with Innovate UK.
The Commissioning Body was Innovate UK
(formerly Technology Strategy Board)
-17 month period
-Over 150 participants
-Cost £207,000 in total – a small drop in the
ocean in the context of partnership investing
£200m over five years in stratified medicine.
This partnership involved a range of external partners including
-The Medical Research Council
-Cancer Research UK and Arthritis Research UK
-DoH
-Scottish Government Health Directorate
-National Institute for Health and Care Excellence (NICE)
www.sciencewise-erc.org.uk
Aim of the dialogue
To identify:
• the human issues raised by
stratified medicine
• The implications for how stratified
medicine is delivered
• What stratified medicine means for
those who would benefit from it, and
conversely, those who would not
benefit from it.
• Establish the kind of ethical
framework and practical
approaches to consent for trials that
would build public confidence 4
www.sciencewise-erc.org.uk
Multi-Strand Approach
5
Targeted Workshops
•Sub-sets of the public identified
• Patients (young and adult)
•BME members of the public
•Patient support groups
•Useful in addition to public
workshops but not a replacement
•Evening workshops (2 hours, 2
weeks apart)
Public Workshops
•Two full day workshops
•Deliberative, depth,
information
•London and Glasgow
•Objective was to
understand the diversity of
public views on stratified
medicine.
Self-Facilitated Workshops
-Focused on pre-existing groups
e.g patient support and youth
groups
-Did focus attention on those
who may not otherwise have
been engaged/included
-Many lessons learnt from this
aspect of the approach (variable
quality due to volunteers)
www.sciencewise-erc.org.uk
Key messages from participants
A number of challenges identified:
1)Definition and communication – clearly defining and
presenting a realistic picture of stratified medicine.
2)Implications for patients and care and challenges
re choice – supporting patients to make sound
treatment decisions and providing right facilities/training
for professionals. Support those for whom there is no
treatment.
3)Social issues – some ethnicities not getting as high
quality treatment as others resulting in health
inequalities
4)Research, testing and data sharing
- Data sharing, regulation of data sharing, perception of
medical research industry needs to be reconciled.
6
www.sciencewise-erc.org.uk
Impact & Influence
• As the dialogue finished in August 2014 it is difficult to fully assess
the impact of the dialogue.
However
• - Innovate UK have disseminated the dialogue results and
identified immediate impacts of the dialogue
• Change in the way Innovate UK staff communicate (move from
‘stratified’ medicine to ‘personalised’ or ‘tailored’ medicine).
• Stress that it is evolution of established practice, rather than a new
concept.
• Accounts for the sensitivity for particular ethnic groups and
communities and focus now on access to appropriate treatments.
• Views on data sharing and sensitivities also of particular use
• Showed to public bodies that people were capable of making
sense of complex information and coming up with reasoned
opinions.
7
www.sciencewise-erc.org.uk
Best Practice Dialogue
• Five elements of the project worked
well in particular. These were
- The Oversight Group before the
contractor was appointed (framed
dialogue, added to credibility of project
and results)
- Clear objectives and design/delivery
worked effectively
- Sufficient time and initial scoping
review
- Targeted specific groups likely to be
affected – built credibility.
8
www.sciencewise-erc.org.uk
Public dialogue is particularly
valuable when….
• policy is at an early stage of development and public interests
and concerns may be satisfied if understood and responded to
early
• issues are /potentially contentious and there is potentially
strong public interest
• technical expertise and stakeholder views alone are not
sufficient
• successful implementation will depend on getting the
practicalities right
www.sciencewise-erc.org.uk
Video on Stratified Medicine
Public Dialogues….

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Stratified Medicine Public Dialogue Case Study Part 3

  • 1. www.sciencewise-erc.org.uk Stratified Medicine: A public dialogue case study Reema Patel Policy Analyst, Sciencewise
  • 2. www.sciencewise-erc.org.uk Recent advances in science allow us to understand the underlying molecular causes of disease. This means that tests can understand the cause of that disease, identifying new treatments to be developed that target those diseases more precisely. This divides patients into ‘strata’ of those expected to respond to a particular treatment or medicine, and marks a technique likely to prompt a cultural shift in the way we ‘do’ medicine for the future. Stratified Medicine – What Is It?
  • 3. www.sciencewise-erc.org.uk Public Dialogue on Stratified Medicine with Innovate UK. The Commissioning Body was Innovate UK (formerly Technology Strategy Board) -17 month period -Over 150 participants -Cost £207,000 in total – a small drop in the ocean in the context of partnership investing £200m over five years in stratified medicine. This partnership involved a range of external partners including -The Medical Research Council -Cancer Research UK and Arthritis Research UK -DoH -Scottish Government Health Directorate -National Institute for Health and Care Excellence (NICE)
  • 4. www.sciencewise-erc.org.uk Aim of the dialogue To identify: • the human issues raised by stratified medicine • The implications for how stratified medicine is delivered • What stratified medicine means for those who would benefit from it, and conversely, those who would not benefit from it. • Establish the kind of ethical framework and practical approaches to consent for trials that would build public confidence 4
  • 5. www.sciencewise-erc.org.uk Multi-Strand Approach 5 Targeted Workshops •Sub-sets of the public identified • Patients (young and adult) •BME members of the public •Patient support groups •Useful in addition to public workshops but not a replacement •Evening workshops (2 hours, 2 weeks apart) Public Workshops •Two full day workshops •Deliberative, depth, information •London and Glasgow •Objective was to understand the diversity of public views on stratified medicine. Self-Facilitated Workshops -Focused on pre-existing groups e.g patient support and youth groups -Did focus attention on those who may not otherwise have been engaged/included -Many lessons learnt from this aspect of the approach (variable quality due to volunteers)
  • 6. www.sciencewise-erc.org.uk Key messages from participants A number of challenges identified: 1)Definition and communication – clearly defining and presenting a realistic picture of stratified medicine. 2)Implications for patients and care and challenges re choice – supporting patients to make sound treatment decisions and providing right facilities/training for professionals. Support those for whom there is no treatment. 3)Social issues – some ethnicities not getting as high quality treatment as others resulting in health inequalities 4)Research, testing and data sharing - Data sharing, regulation of data sharing, perception of medical research industry needs to be reconciled. 6
  • 7. www.sciencewise-erc.org.uk Impact & Influence • As the dialogue finished in August 2014 it is difficult to fully assess the impact of the dialogue. However • - Innovate UK have disseminated the dialogue results and identified immediate impacts of the dialogue • Change in the way Innovate UK staff communicate (move from ‘stratified’ medicine to ‘personalised’ or ‘tailored’ medicine). • Stress that it is evolution of established practice, rather than a new concept. • Accounts for the sensitivity for particular ethnic groups and communities and focus now on access to appropriate treatments. • Views on data sharing and sensitivities also of particular use • Showed to public bodies that people were capable of making sense of complex information and coming up with reasoned opinions. 7
  • 8. www.sciencewise-erc.org.uk Best Practice Dialogue • Five elements of the project worked well in particular. These were - The Oversight Group before the contractor was appointed (framed dialogue, added to credibility of project and results) - Clear objectives and design/delivery worked effectively - Sufficient time and initial scoping review - Targeted specific groups likely to be affected – built credibility. 8
  • 9. www.sciencewise-erc.org.uk Public dialogue is particularly valuable when…. • policy is at an early stage of development and public interests and concerns may be satisfied if understood and responded to early • issues are /potentially contentious and there is potentially strong public interest • technical expertise and stakeholder views alone are not sufficient • successful implementation will depend on getting the practicalities right
  • 10. www.sciencewise-erc.org.uk Video on Stratified Medicine Public Dialogues….

Editor's Notes

  1. Remotely Piloted Aircraft systems