This document discusses strategies for communicating the potential of personalized medicine to stakeholders in Europe. It begins by setting the context of the complexity of personalized medicine and the European healthcare landscape. It then examines stakeholders' current perceptions and initiatives related to personalized medicine. Several hypotheses are presented for how to advance adoption, including that social change is a major barrier, personalized medicine encompasses more than just genomics, and that a new health paradigm is needed. The document concludes by offering thought starters for communications strategies, such as humanizing genomics and demonstrating the new value model of personalized medicine. The desired future is for stakeholders like patients, physicians and policymakers to see personalized healthcare as empowering and improving outcomes while reducing costs.
EUPATI’s framework on Informing the “health-interested” public about medicine...
Presentation for EPEMED Webinar (11-27-12) Final
1. COMMUNICATING THE POTENTIAL
OF PERSONALISED MEDICINE TO
STAKEHOLDERS IN EUROPE
From Complexity to Clarity:
EPEMED Webinar
November 27th, 2012
Stig Albinus
APCO Worldwide
2. Overview of Presentation
• Setting the stage: Complexity or confusion?
• European healthcare landscape
• How to advance adoption of personalised
medicine – learning from other disruptive
technologies
• Five hypotheses about change
• Four thought starters about communications
strategies
• Desired future stakeholder perceptions
• Opportunities for EPEMED and its members
2
5. EU Health and Pharmaceutical
Policy Today
Trends & Challenges
Sustainability of European healthcare systems under threat:
• Strong focus on cost-containment with healthcare reform and European austerity measures
• Changing demographics – ageing population
• Lack of recognition of the value of innovation
Role and influence of policy makers and payer audiences continue to grow:
• Rapid and unpredictable changes in government pricing policies
• HTA evaluation to inform reimbursement decisions
EU Pharmaceutical Policy & Legislation EU Medical Devices Legislation
• Reflection process on PM
• Revision Transparency Directive
• Review Data Protection Directive
• EMA Reflection papers and Consultations
on Genomics and PM
• Recast of Medical Devices Directives and
IVD Directive
5
6. EU Stakeholder Insights about
Personalised Medicine
• 70% of primary care physicians, neurologists and cardiologists
expect personalised medicine to become routine in their own clinical
practice within five years (EU and US survey)
– 37% of oncologists claim to be ‘very familiar’ with personalised medicine and only
6% of other specialists and 5% of PCPs
– “Eye for pharma” website, 16 October 2012 http://social.eyeforpharma.com/patients/personalised-medicine-%E2%80%93-through-
eyes-physician
• Personalised healthcare will deliver improved health outcomes (64%
of 840 respondents)
– Absence of clear regulatory guidelines is causing delay in marketing and
authorisation of personalised health care products and services (over 60% of
respondents)
– Healthcare spending will increase short term - 5 years (58% of respondents), but
will decrease long-term - 15 years (46% of respondents)
– Europe-wide cooperation will be necessary for the development and adoption of
personalised healthcare (80 % of respondents)
– “Health for All, Care for You,” Karolinska Institutet Survey on the Promise of Personalised Healthcare in Europe, 2010)
http://www.sciencebusiness.net/pdfs/PM_survey_results.pdf
6
7. EU Stakeholder Initiatives Around
Personalised Medicine
• Some European hospitals are engaged in the development of new
imaging technology and genetic tools, mostly in cancer, but state
“major challenges including learning curve for doctors and consumer
behavior”
– http://www.hope.be/05eventsandpublications/docpublications/88_personalised_medicine/88_HOPE-PWC_Publication-
Personalised-Medicine_February_2012.pdf
• Few initiatives at the Member State government level – Ireland one
exception citing personalised medicine as key area for
commercialisation
– “Research Prioritisation Report” recommends “mapping exercise to identify areas
of strength and opportunity, e.g., personalised medicine/diagnostics,
biomarkers…”
– http://www.forfas.ie/media/ffs20120301-Research_Prioritisation_Exercise_Report.pdf
• Patients and patient organizations are largely absent from the public
debate – with the exception of cancer advocacy groups
7
8. EU/US Comparisons
• While there are many similarities, the single-payer European
healthcare systems may provide a better foundation for personalised
medicine, particularly population-based strategies
– There are however large variations across Member States
• European austerity measures will short term represent a significant
challenge for investing in personalised medicine
• Multi-tiered US health care system may enable advances in
personalized medicine
– However limited to better funded health plans, integrated delivery systems and
upscale markets
8
9. Key Stakeholder Overview
• Hope, but limited understanding
– Continued general belief in the promise, but major obstacles due to limited
understanding
• Oncology is still the main focus, but less obvious
– Growing controversy about the reality of the promise
• Questions about physician readiness and clinical utility
– GPs believe PM will eventually change medical practice, but limited experience
• Consumer privacy concerns
– Consumers are hopeful, but concerned about privacy implications
• Policymakers on the fence
– Policymakers are not clear about the relevance short term – Still waiting for the
Commission’s …omics report!
• Cost is a concern
– General concerns about increase in costs short-term
• There is a huge information and communication gap
– Limited, if any information in general consumer and business media
9
10. BIG PROMISE
“Personalised medicine offer
tremendous opportunities for better
care and raise high expectations”
John Dalli, Former EU Health Commissioner
Reduce medical errors
Improve patient outcomes
Reduce total healthcare spending
over 15 years
“Health for All, Care for You,.” Karolinska Institutet Survey on
the Promise of Personalised Healthcare in Europe, 2010
Summary of Opportunities
and Challenges for Personalised
Medicine in Europe
BIG OBSTACLES
Research, technology and standards
Lack of common EU policy
and regulatory framework
Financial and reimbursement
Lack of education of
physicians and patients
“European Perspectives in Personalised Medicine”,
European Commission, 12-13 May, 2011
10
12. Hypothesis #1:
Social Change is a Real Barrier
• While there are scientific, regulatory and financial obstacles to
advancing personalised medicine, the major barrier to unlocking its
potential is the human factor:
– Personalised medicine represents a powerful, disruptive and radical change of social
and cultural interactions and communications among all stakeholders in all aspects
of the health care delivery chain
– A typical example of moving a hot technology from the laboratory to market
– Particularly in a conservative sector such as health care
12
“For the technology to be fully implemented and integrated across
the healthcare value chain, stakeholders recognised both scientific
and structural hurdles that needed to be overcome. In fact, without
a “basic understanding of human biology and disease mechanisms”
the majority of the stakeholders failed to see a smooth transformation
from the traditional healthcare paradigm to personalised healthcare.
“
“Health for All, Care for You,.” Karolinska Institutet Survey on the Promise of Personalised Healthcare in Europe, 2010)
13. From Newton to iPad
Apple Newton
1987
Apple iPad
2010
13
14. Typical Adoption Cycle
for Disruptive Innovation
14
AWARENESSACCEPTADOPTION
The iPad
The Internet
Genomics
TIME
15. Learning from Disruptive Innovation Cycles
• Need to generate awareness and acceptance among
users and consumers before adoption happens
• Adoption is based on emotional attachment and
experiences of personal value – not only a scientific or
technical rationale
We need to
HUMANISE AND PERSONALISE
genomics medicine
15
16. Hypothesis #2: Personalised Medicine is
More than Genomics
• Personalised medicine/healthcare is the use of information to tailor
treatment to individual groups of patients. This can include using
genetic data, diagnostic tests or patient databases for segments of
the population to maintain health, prevent disease, improve the
outcomes of therapy and patient safety while reducing costs
16
“ “In effect we are looking at refining the
definition of health and disease – to the point
where the current definitions will be obsolete.
Ruxandra Draghia-Akli, Director-General for Research and Innovations,
European Commission, “European Perspectives in Personalised Medicine, 12-13 May, 2011
17. Defining Personalized Medicine
Patient-
Centricity &
Empower-
ment
Drug-
diagnostics
pairing
17
Genetics
Biomarkers
Targeted
Therapies
Personal Technology
Imaging
Personal health technologies
eHealth
Data
Knowledge
18. Integrate personal health technology
AND
personalised medicine strategies
Leverage Personal Technologies to Drive
Acceptance of Personalised Medicine
• Personal technologies – from electronic personal health records to
portable smart phones – represent opportunities for empowering
patients in the management of their own health by accessing
genomics data
– Engage patients in the development of personalised medicine solutions: clinical
trials, donations to tissue/biobanks, individual genetic tests
– Engage consumers/patients in collaboration with physicians
18
19. Hypothesis #3: Broader Acceptance of
PM with New Health Paradigm
• Communication is more than a vehicle for educating
stakeholders about the benefits of personalised medicine
• Communication is an intrinsic driver of change
• The personal and social involvement and engagement of
stakeholders is the pathway to awareness, acceptance
and adoption
19
20. The Current Disease Paradigm
Costs
Risk factors
Life style
Pre-disease Diagnose
disease
Disease
escalation
Morbidity Mortality
Level of education and
personal engagement
Health
education
Early
detection
Disease
interception
Therapy
Palliative
care
20
21. Costs
Risk factors
Life style
Pre-disease Diagnose
disease
Disease
escalation
Morbidity Mortality
Level of education and
personal engagement
Health
education
Early
detection
Disease
interception
Therapy
Palliative
care
21
The New Personal Health Paradigm
Empowerment &
behavior change
Selfcare &
involvement
Chronic disease
management
Genomics and
personal health
technologies
22. Leverage Genomics and Personal
Technologies to Create New Health Paradigm
• Utilize technologies – genomics, personal health
technologies, eHealth, etc. – to drive behavior change
• Empower patients/consumers to take more control over
their own health and engage in decisions about
prevention, disease interception
22
Improve
HEALTH OUTCOMES AND QUALITY OF LIFE
while reducing costs
24. Hypothesis #5: Strategic Sequencing
and Partnerships
• We need the buy-in from clinicians, medical societies, healthcare
professionals and patient associations before we can get
policymakers’ and payer’s attention
PM industry
Physicians
Medical societies
Patient groups
Policymakers
Payers
24
DRIVE CHANGE OF POLICIES AND HEALTH SYSTEMS
based on stakeholder movements
26. Thought Starter #1: Humanise Genomics
• Create and tell human and emotionally powerful stories about the
experiences of patients utilising genetic tests and targeted therapies
• Expand focus and education beyond oncology
• Engage scientists and clinicians as partners in story telling to tell
their personal story
• Utilise info graphics, animation and video to simplify and humanise
complex science around genomics
OUTCOMES
Create an emotionally exciting image of what personalised
medicine means to the individual
26
27. Thought Starter #2: Communicate and
Drive Adoption of New Value Model
• Demonstrate the benefits of personalised medicine on patients and populations
through health economic modeling
– Utilize prospective modeling of future health and socioeconomic scenarios for Europe
– Build on study of the value of cancer care comparing US and Europe in Health Affairs,
May 2012 - utilise data from EUROCARE registries
Philipson et al: An Analysis Of Whether Higher Health Care Spending In The United States Versus Europe Is ‘Worth It’ In The Case Of Cancer
– http://content.healthaffairs.org/content/31/4/667.full
• Communicate the new value model to build understanding of the value of
investing short-term in personalised medicine in Europe to drive significant,
longer-term positive impact on the economies, productivity and patient survival –
pilot in specific disease states and geographies
OUTCOMES
Create tangible vision about a new,
personalised health care system in Europe
27
28. Thought Starter #3: Connect PM
Innovation to Business Growth
• Map and identify opportunities for the development of personalised
medicine, diagnostics and biomarkers as important drivers of
commercialisation, business growth and jobs creation
• Highlight advances in science, innovation and technology to engage
the PM industry in dialogue with industry, business leaders and
policymakers about the strategic role of health innovation in the
economic recovery and future growth in Europe
• Leverage the priorities of the upcoming Irish presidency of the EU to
initiate new initiatives around PM, innovation and economic growth
OUTCOMES
Create urgency about enhancing a dialogue and
initiatives across health care and business sectors
to drive economic growth in Europe
28
29. Thought Starter #4: Build Ecosystem
• Take a page from the technology industry and create an open, social
eco-system for collaboration around personalised medicine (SAP,
Intel, others)
• Engage all key stakeholder groups – physicians, patients,
consumers, payers, policymakers – in ongoing conversations and
exchange of experiences
• Stimulate Transatlantic dialogue and networking
• Sponsored by industry, but with free exchange of ideas and opinions
OUTCOMES
Create a vibrant social community for innovative
collaboration between scientists, clinicians,
patients/consumers and policymakers
29
31. 31
Personalised healthcare is a new
model that gives me the choice
of the right treatment for my
particular needs at the right time
and empowers me to take more
control over my personal health
Patient Perspective
32. 32
Physician Perspective
Personalised healthcare is a new model
that gives me the professional satisfaction
of helping my patient identify risks for
disease and prevent, intercept and treat
disease earlier so that I can help prolong
my patient’s life and quality of life
33. 33
Policymaker Perspective
Personalised healthcare is a new
model that gives me opportunity to lead
the development of new policies that
improve health outcomes, enhance
patient safety and longer term reduce
health care spending
34. Opportunities for EPEMED
and Its Members
• Conduct survey among policy and opinion elites on how to
communicate about personalised medicine
• Map and identify new and disruptive ways of communicating
the potential benefits of personalised medicine, for example
– Humanizing the benefits
– Integrating PM with personal health technology revolution
– Demonstrating the economic benefits of PM
– Connecting PM innovation with economic growth
• Pilot new ecosystem for multi-stakeholder engagement
• Drive Transatlantic Dialogue
34
35. Conclusions: Escalating Momentum
• A disruptive technological innovation such as personalised medicine
requires disruptive communications and social engagement
• We need to unlock the emotional drivers and barriers to achieve
broader adoption
• Integrating personal health technologies and personalised medicine
represents a strategic opportunity
• It will take time, and the process is not linear, but it will happen
• It will continue to be a complex process and not always as clear as
we hope… But industry innovators have a huge opportunity for
escalating the momentum, leading and driving change
35
36. Discussion
Contact for further questions and discussion:
Stig Albinus, APCO Worldwide, New York
salbinus@apcoworldwide.com
36