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From Complexity to Clarity:
COMMUNICATING THE POTENTIAL
OF PERSONALISED MEDICINE TO
STAKEHOLDERS IN EUROPE

EPEMED Webinar
November 27th, 2012
Stig Albinus
APCO Worldwide
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
Complexity or Confusion?




                           3
EUROPEAN
HEALTH CARE
LANDSCAPE AND
STAKEHOLDER
INSIGHTS




                4
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                       •   Recast of Medical Devices Directives and
•   Revision Transparency Directive                    IVD Directive
•   Review Data Protection Directive
•   EMA Reflection papers and Consultations
    on Genomics and PM




                                                                                                  5
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
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
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
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
Summary of Opportunities
         and Challenges for Personalised
               Medicine in Europe
             BIG PROMISE                                                   BIG OBSTACLES

    “Personalised medicine offer                                    Research, technology and standards
tremendous opportunities for better
                                                                        Lack of common EU policy
care and raise high expectations”
                                                                        and regulatory framework
       John Dalli, Former EU Health Commissioner


                                                                       Financial and reimbursement
          Reduce medical errors
                                                                            Lack of education of
       Improve patient outcomes                                            physicians and patients

 Reduce total healthcare spending                                       “European Perspectives in Personalised Medicine”,
                                                                             European Commission, 12-13 May, 2011
          over 15 years
 “Health for All, Care for You,.” Karolinska Institutet Survey on
   the Promise of Personalised Healthcare in Europe, 2010


                                                                                                                            10
HOW TO ADVANCE
ADOPTION OF
PERSONALISED
MEDICINE?




                 11
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




   “    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)


                                                                                                                                        12
From Newton to iPad




Apple Newton          Apple iPad
    1987                2010

                                   13
Typical Adoption Cycle
            for Disruptive Innovation
                                     The iPad
ADOPTION




                                 The Internet
ACCEPT




                     Genomics
AWARENESS




                                                TIME


                                                       14
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
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




    “   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




                                                                                                                16
Defining Personalized Medicine


                       Drug-
     Genetics       diagnostics
                                      Targeted
    Biomarkers        pairing         Therapies

                    Patient-
                   Centricity &
                   Empower-
                      ment




           Personal Technology
                       Imaging
             Personal health technologies
                       eHealth
                         Data
                     Knowledge



                                                  17
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




      Integrate personal health technology
                                     AND
         personalised medicine strategies
                                                                                       18
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
The Current Disease Paradigm
Level of education and
personal engagement




                                                                               Costs




           Health          Early            Disease                            Palliative
                                                             Therapy
          education      detection        interception                           care




          Risk factors   Pre-disease   Diagnose      Disease       Morbidity           Mortality
           Life style                   disease     escalation
                                                                                                   20
The New Personal Health Paradigm
Level of education and
personal engagement




           Costs




           Health              Early             Disease                                    Palliative
                                                                       Therapy
          education          detection         interception                                   care

         Genomics and
                           Empowerment &         Selfcare &          Chronic disease
         personal health
                           behavior change      involvement           management
          technologies




          Risk factors      Pre-disease      Diagnose          Disease          Morbidity           Mortality
           Life style                         disease         escalation
                                                                                                                21
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



                  Improve
  HEALTH OUTCOMES AND QUALITY OF LIFE
            while reducing costs

                                                            22
Hypothesis #4: We Need a New Value
   Model – Oncology as Example

CURRENT APPROACH                                                  FUTURE APPROACH

        Static                                                                   Dynamic

    Retrospective                                                             Prospective
  Mono-therapy focus                                                   Multi-modality focus
    Single-disease                                                           Multi-disease
     Time-limited                                                             Continuous
   Product focused                                                         Patient-centric
     Hypothetical                                                                Real-life
  Single-patient view                                                    Population-based


          “Sustaining Progress Against Cancer in an Era of Cost Containment,” June, 2012.
           http://turningthetideagainstcancer.org/sustaining-progress-discussion-paper.pdf

                                                                                              23
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

                            Physicians
                                                          Policymakers

PM industry              Medical societies

                                                            Payers
                          Patient groups




DRIVE CHANGE OF POLICIES AND HEALTH SYSTEMS
              based on stakeholder movements
                                                                         24
THOUGHT
STARTERS ABOUT
COMMUNICATIONS
STRATEGIES




                 25
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 infographics, 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
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
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
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
DESIRED FUTURE
STAKEHOLDER
PERCEPTIONS




                 30
Patient Perspective
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




                                     31
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




                                              32
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




                                          33
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
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
Discussion

Contact for further questions and discussion:
 Stig Albinus, APCO Worldwide, New York
         salbinus@apcoworldwide.com
         www.apcoworldwide.com
            @apcoworldwide
                                                36

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From Complexity to Clarity: Communicating the Benefits of Personalised Medicine to Stakeholders in Europe

  • 1. From Complexity to Clarity: COMMUNICATING THE POTENTIAL OF PERSONALISED MEDICINE TO STAKEHOLDERS IN EUROPE 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 • Recast of Medical Devices Directives and • Revision Transparency Directive IVD Directive • Review Data Protection Directive • EMA Reflection papers and Consultations on Genomics and PM 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. Summary of Opportunities and Challenges for Personalised Medicine in Europe BIG PROMISE BIG OBSTACLES “Personalised medicine offer Research, technology and standards tremendous opportunities for better Lack of common EU policy care and raise high expectations” and regulatory framework John Dalli, Former EU Health Commissioner Financial and reimbursement Reduce medical errors Lack of education of Improve patient outcomes physicians and patients Reduce total healthcare spending “European Perspectives in Personalised Medicine”, European Commission, 12-13 May, 2011 over 15 years “Health for All, Care for You,.” Karolinska Institutet Survey on the Promise of Personalised Healthcare in Europe, 2010 10
  • 11. HOW TO ADVANCE ADOPTION OF PERSONALISED MEDICINE? 11
  • 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 “ 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) 12
  • 13. From Newton to iPad Apple Newton Apple iPad 1987 2010 13
  • 14. Typical Adoption Cycle for Disruptive Innovation The iPad ADOPTION The Internet ACCEPT Genomics AWARENESS TIME 14
  • 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 “ 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 16
  • 17. Defining Personalized Medicine Drug- Genetics diagnostics Targeted Biomarkers pairing Therapies Patient- Centricity & Empower- ment Personal Technology Imaging Personal health technologies eHealth Data Knowledge 17
  • 18. 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 Integrate personal health technology AND personalised medicine strategies 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 Level of education and personal engagement Costs Health Early Disease Palliative Therapy education detection interception care Risk factors Pre-disease Diagnose Disease Morbidity Mortality Life style disease escalation 20
  • 21. The New Personal Health Paradigm Level of education and personal engagement Costs Health Early Disease Palliative Therapy education detection interception care Genomics and Empowerment & Selfcare & Chronic disease personal health behavior change involvement management technologies Risk factors Pre-disease Diagnose Disease Morbidity Mortality Life style disease escalation 21
  • 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 Improve HEALTH OUTCOMES AND QUALITY OF LIFE while reducing costs 22
  • 23. Hypothesis #4: We Need a New Value Model – Oncology as Example CURRENT APPROACH FUTURE APPROACH Static Dynamic Retrospective Prospective Mono-therapy focus Multi-modality focus Single-disease Multi-disease Time-limited Continuous Product focused Patient-centric Hypothetical Real-life Single-patient view Population-based “Sustaining Progress Against Cancer in an Era of Cost Containment,” June, 2012. http://turningthetideagainstcancer.org/sustaining-progress-discussion-paper.pdf 23
  • 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 Physicians Policymakers PM industry Medical societies Payers Patient groups DRIVE CHANGE OF POLICIES AND HEALTH SYSTEMS based on stakeholder movements 24
  • 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 infographics, 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. Patient Perspective 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 31
  • 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 32
  • 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 33
  • 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 www.apcoworldwide.com @apcoworldwide 36

Editor's Notes

  1. Good afternoon. Welcome Ladies and Gentlemen. And thank you to EPEMED for inviting me to present at this webinar “From Complexity to Clarity: Communicating the potential of personalised medicine to stakeholders in Europe.”My name is Stig Albinus. I am head of health care at APCO Worldwide in New York. APCO Worldwide is a global communications, stakeholder engagement and business strategy firm.I have more than 30 years experience in global health care communications. I have spent most of my life in Europe and the last 14 years in the United States. I have worked for international pharmaceutical, medical device, and diagnostics companies as well as hospital systems and providers groups in Europe and the US. The last several years, I have taken great interest in the evolution of personalised medicine working for a number of diagnostic and biopharmaceutical companies on opportunities and challenges pertaining to genetic testing and genomics.
  2. Here is an overview of the topics I will cover in my presentation during this webinar.There will be time for Q&A at the end of the webinar.
  3. Let’s first set the stage for the topic that I am covering today. When you look at the media coverage, you get a sense that there personalised medicine is not only very complex. There is confusion particularly regarding the question of how real the promise of personalised medicine is.Just take a look at some stories this last year.In March this year, several media outlets reported about a “Setback for customized cancer treatment based on genetics.” A study in patients with advanced kidney cancer done at the Cancer Research Institute in London and published in New England Journal of Medicine showed that there a big differences from place to place in the same tumouras to which genes are active or mutated. This means that a single biopsy would reveal only a minority of mutations. This challenge, also called intra-tumor heterogeneity, means that cancer genetics is much more complex than previously thought, that the development of targeted therapies will be more challenging and more costly.Around the same time, the ASCO Post, the electronic newsletter, reported on leading oncologists discussing the fact that some disease subgroups are so small that we need smaller trials, in some cases so small that it will be impossible to implement clinical trials with sufficient power. This leads Dr. Mills of MD Anderson to say “Thus while there is incredible excitement about the potential implementation of personalized cancer therapy, it is easy to contend that the spectacular press and excitement is massively overblown.”These comments are significant since it has become conventional wisdom that personalised medicine is already reality in oncology. The reality is that even within oncology the actual implementation of personalised medicine is still being discussed.On the flipside, we also see stories such as a recent one in the Wall Street Journal stating that “Personalized Medicine Moves Closer” in an article referring to a report from the 1000 Genomes Project published in Nature, where 700 scientists from several countries have identified 38 million variations in the chemical letters of DNA that make up each person’s 23,000 or so genes – about 98% of all the estimated human variation in the world. So the big question is what is promise, what is reality and how de we progress towards making personalised medicine real? What role can communications play is creating clarity?
  4. Let’s take a look at the European health care landscape as it is very important to discuss personalised medicine in the context of the changes that are going on more broadly.
  5. Some of the key trends that do impact the implementation of personalised medicine in Europe are first of all:The sustainability of European healthcare systems are threatened by the strong focus on cost containment – whether it is due to health care reform or austerity measuresA growing ageing populationLack of recognition of the value of innovationThe power and influence of policy makers and payers continue to grow.On the policy side, the European Commission has advanced directives on transparency around pricing and reimbursement for personalised therapies and artound data protection, but on all other aspects, policies are still uncertain. The so-called …omics report from the European Commission has been in development for now about two years. And the recent resignation of EU Health Commissioner John Dalli will no doubt further delay this report with a few months.====Reflection process on PMThis “reflection process” started with the organisation of a series of workshops and big conference organised in 2010-2011 on personalised medicines (see http://ec.europa.eu/research/health/policy-issues-pm-conferences-workshops_en.html)  Based on the outcome of this reflection process, ex-Commissioner Dalli committed several times (already back in 2011!) to produce a report on “the use of personalised medicines” in the course of 2012. Last December, Commissioner Dalli said his intention was indeed to present a “report on the use of “Omics“ technologies in pharmaceutical R&D, in 2012, whose purpose would be to:Take stock of the R&D in the field of personalised medicinesAssess whether new EU instruments are needed to support the development of personalised medicinesThis report is, however, unlikely to be revealed before mid-2013; Commissioner Dalli’s resignation will probably further delay this publication, as Dalli’s successor (Tonio Borg) will likely focus his work on “hard-core law”
  6. When we look at the perceptions among stakeholders regarding personalised medicine in Europe, we find that physicians in general expect personalised medicine to become a routine in their own clinical practice within a few years.However, most physicians are not very familiar with personalised medicine – even among oncologists only 37% say they are “very familiar” with PM.A majority of all stakeholders expect that personalised medicine will improve health outcomes, as we see in a recent major European survey conducted by KarolinskaInstitutet among healthcare providers, industry, patient groups, policy makers and researchers (in Belgium, France, Netherlands, UK and other countries).However, the majority of European stakeholders expect that health care spending will increase the next five years due to personalised healthcare.Interestingly, 80% of the respondents agree that Europe-wide cooperation will be necessary for the development and adoption of personalised medicine.
  7. Many hospitals in Europe have begun to define what personalised medicine means to the hospital and have started the development of strategies for implementation. However, as a report from PriceWaterhouse and the European Hospital and Healthcare Federation showed that “although Europe is starting the paradigm shift towards personalised medicine, many barriers still need to be addressed” referring to barriers around: lack of research funding, lack of strong scientific evidence in some fields, lack of knowledge among doctors and lack of a clear reimbursement system.Overall the report cited major challenges due to learning curve for doctors and consumer behavior. [The report looked at PM in six European hospitals in Denmark, Finland, France, Hungary, Slovenia and Spain.]There are few initiatives at the EU Member State government level. Ireland is one exception citing personalisedmeeicine as a key area for commercialisation. This was also highlighted in speech by the Irish Minister for Small Business John Perry at the BioPharma Summit (October 2012). On the consumer/patient side, few patient groups are engaged in the topic – with the exception of a few cancer advocacy groups.
  8. While there are similarities between European and the US, the European health care model based on single-payer systems may provide a better foundation for personalised medicine, particularly population-based strategies – than a fragmented system such as the US.However, Europe has large variations across Member States.We may see advances in innovative implementation of personalised medicine, but it is likely to be limited to more well-funded health plans and upscale private markets.
  9. So here is a summary of stakeholder perceptions and insights.There is hope, but very limited knowledgeOncology still the main focus – but also a window to the challengesQuestions about physicians being preparedConsumer privacy concernsPolicy makers on the fenceCost is a concernHuge information and communication gap
  10. In summary, there is a BIG PROMISE about personalised medicine in Europe, but there are also BIG OBSTACLES.
  11. Given this big promise and the big obstacles, how should adoption of personalised medicine be advanced?I will now present you with five hypotheses that will help inform any communications strategy for personalised medicine.
  12. My first hypothesis is that the adoption of personalised medicine is a longer-term process that will require social change. 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 chainA typical example of moving a hot technology from the laboratory to marketParticularly in a conservative sector such as health care
  13. Let’s take the iPad as an example.In 1987, I remember standing in a department store in London with the brand new Apple Newton in my hand. I was fascinated and thought about buying the device. I tried using the pen on the screen to see if the device could turn my hand writing into digital text. It did not work so well.Many commentators laughed at the Newton and it was considered a flop.Nevertheless, the Newton was the pre-cursor for the iPad. Nobody laughs at the iPad today.What has happened between 1987 and 2010 when the first iPad was launched?We as consumers have changed and the adoption of web-based services and personal technologies have exploded. We as consumers have been educated and empowered to expect, demand and use data, news and entertainment anywhere, anytime. So a dramatic change in consumer behavior and social interaction has happened.
  14. This is very similar with the emperor of all newer technologies, the Internet. The Internet created a lot of hype in the 1990’ties. The CEO of Andersen Consulting (now Accenture), George Sheehan, left Andersen Consulting in 1999 to start Web-van, a worldwide, online grocery store. Web-van failed miserably because consumers had no idea or interest in shopping daily groceries online. Today, there are successful online grocery stores in many urban areas in the US and Europe. If we look at the genomics revolution, we recognize that innovation moves in waves – not in a straight line. From the excitement about the humane genome project until today, there have been many ups and downs, a lot of hype, promise and important innovation.
  15. What can we learn from disruptive innovation cycles in technology?We need to generate awareness and acceptance among users and consumers before adoption can happen.Adoption is not just based on rational persuasion. Emotional attachment and experience of personal value is what drives change and adoption.
  16. My second hypothesis is that we should look at personalised medicine as more than genetic testing, genomics or pairing diagnostics with therapies.Personalised medicine is a new paradigm for how we think about, deal with and manage health and disease.I like the definition that was used for the KaraolinskaInstitutet survey project: “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.”This is very much in line with the point of view that RuxandraDraghia-Akli, EU Director-General for Research and Innovations has presented: “In effect we are looking at refining the definition of health and disease – to the point where the current definitions will be obsolete.”
  17. This more expansive view on personalised medicine is shown in my chart here: Personalised medicine is more than drug-diagnostics pairing. Personalised medicine encompasses the entire continuum of 1) genetics and biomarkers, 2) targeted therapies and 3) technology. In its totality, this new continuum of care enables more patient-centered medicine where the individual patient is empowered to leverage information to choose the best possible treatment option for that individual at the right time.
  18. When looking at personalised medicine more broadly, it also makes sense to see the genomics revolution as happening in tandem with another important mega-trend in medicine: the development of personal health technologies.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
  19. This then leads me to my third hypothesis: We can achieve broader acceptance of personalised medicine if we see personalised medicine in the context of a new health paradigm.This hypothesis is built on the fundamental premise that we should view communications as more than a vehicle for communicating the benefits of personalised medicine to stakeholders.Communications is an intrinsic driver of change for a new health paradigm.
  20. In the current, old disease-paradigm, there is little need for education and communications.The currently prevailing disease paradigm puts the main emphasis on late-stage disease and is less focused on prevention, early detection and disease interception. The majority of the resources and costs are invested in the later and very expensive stages of disease as demonstrated in the vast resources put into secondary, disease systems in the form of hospitals. In the old paradigm, we don’t need people/patients to be educated,engaged and communicate about their health, because we wait for them to engage with the health care system until they have symptoms of disease are so sick that they need emergency care and hospitalization, which is then also more costly.
  21. In the new personal health paradigm consumers/patients and physicians will take advantage of genomics and personal health technologies to detect diseases early – based on genetic pre-disposition – and initiate lifestyle changes and/or treatment early – in many cases before symptoms occur.This new health paradigm requires that consumers/patients are aware, educated and communicate about their needs. They are engaging actively to seek testing and diagnosis early and empowered to make decisions about changing their lifestyle or seek treatment before disease occurs. Personal health technologies, such as smart phones, sensors and detectors at home and connected networks with providers, will enable people to engage more proactively in managing their personal health.This personal health paradigm will require more resources in the early part of the disease continuum, but it will reduce the costs of the treatment of late-stage disease in secondary care systems. And the use of resources will me more cost-effective.This is in line with the study by the Vlerick Leuven Gent Management School Study that I talked about earlier.
  22. So the impact of hypotheses two and three – utilizing personal health technologies and genomics and empowering consumers to take more control over their own health – is that we can improve health outcomes and quality of life while at the same time reducing costs.
  23. As I have said earlier, there is a lack of recognition of the value of innovation in health care. Current health technology assessment models are not geared to appreciate the value of innovation.Let’s take oncology as an example as we have more data in this field than in others.If we assess the value – and reimbursement – of every a drug, a therapy, a diagnostic or medical technology in isolation pertaining to application for a single disease or indication, we are missing the boat on medical innovation.Many new oncology therapies appear to be very costly when you look at them one by one. But if you view each new incremental advance as part of a process leading towards break through discovery in a disease, or across several tumor types and cancers, you have a different assessment. There is a lot of interest in this new forward-looking model for assessing the value of innovation both inside and outside of oncology. And thgis is particularly relevant when we look at personalised medicine.
  24. My final, and fifth hypothesis, is that we need to get buy-in from the medical community and patient groups, before we can get real attention from policy-makers and payers.This has clear implications for how we sequence engagement with key stakeholders.This does not mean that we should not engage with policy makers and payers to educate them about the value of personalised medicine. But it is doubtful whether we will see broader adoption of supportive policies from policy makers before we have manage to get health professionals and patient groups onboard.
  25. My hypotheses lead me to a number of thought starters for communications strategies for personalised medicine that I will now walk through.
  26. The first thought starter is that we need to humanise genomics.This is based on what I have previously stated that personalised medicine will be accepted and adopted more broadly when physicians and consumers understand and see the value that personalised medicine represents to them personally and develops emotional attachments to this technology.This requires that we use emotional pathways to connect with stakeholders – rational persuasion is not enough.
  27. We need to communicate and drive adoption of a new and broader value model.We can leverage and expand on some of the studies that have already been conducted regarding the value of cancer care in Europe vs. the US and highlight the value of investing short-term in personalised medicine to achieve significant longer term positive impact on the economies beyond saving to health care systems.
  28. Ultimately, we should think about connecting personalised medicine innovation with business growth.Leverage the interest by the new Irish Presidency in looking at personalised medicine as a positive driver of commercial and economic growth.
  29. Finally, I propose that we get inspiration from the technology industry in how to engage broader communities of stakeholders in social transformation.Compasnies like SAP and Intel have been successful in creating open, collaborative eco-systems of researchers, engineers, partners, consultants and users utilizing social online communities.
  30. How do we hope to see future perceptions of personalised medicine among key stakeholders?
  31. What can EPEMED and its members do to advance awareness, acceptance and adoption of personalised medicine?Here are a few ideas for your consideration.Start with a survey about communications around personalised medicine.Building on that, map and identify opportunities for new, disruptive and innovative ways to engage stakeholders.Conduct pilots.Drive Transatlantic Dialogue.
  32. Conclusions.