Contents:

Chapter 1 An Introduction to Patient Power 10 Introduction 10 What is patient power? 10 Developments in patient power 11 Drivers of patient power 13 Patient power in operation 15 How the activities of patient groups empower their members 15 Pressure on physicians 17 Case study: Online CML support groups and Novartis’ Gleevec 17 Case study: Gilead Sciences’ Preveon 19 Country-by-country analysis of patient power 20 The role of the healthcare system 21 Cost-control 22 Primary care physicians as gatekeepers to secondary care 23 Patient organizations in different markets 24 Chapter 2 Relationships Between Pharma Companies and Patient Groups 28 Introduction 28 The role of patient groups 28 Early examples of patient groups 29 AIDS patient groups 29 Case study: The Terrence Higgins Trust (UK) 29 Cancer patient groups 32 Case study: Prostate Cancer Awareness Week (US) 32 The changing role of patient groups 33 Leveraging influence 33 New objectives 34 Case study: Coalition of National Cancer Cooperative Groups (US) 34 Patient profiling 35 Marketing support 36 Stronger education materials 36 Case study: American Medical Women's Association 36 Case study: aging patients 37 The role of grassroots activism 39 Case study: American Diabetes Association 40 Case study: The DoD Breast Cancer Research Project 41 Differing goals? 42 Companies seek to develop grassroots activism 43 Case study: The Breast Cancer Coalition (UK) 44 'Campaigning' groups and the Internet 45 The impact of pharma-patient group relationships on compliance 46 Bad drugs or poorly designed doses? 49 Funding of patient groups 51 Chapter 3 Building Effective Relationships with Patient Groups 54 Introduction 54 A new model 54 Case study: Pharmacia and G.R.O.U.P. 55 The rise of the informed consumer 56 Usage patterns 56 Meeting the information need 57 Consumer protection 58 Future outlook 59 The role of patient groups 59 Forming a partnership of equals 60 Pharma company benefits 60 Patient group benefits 61 Broader benefits 61 Communicating through patient groups 63 Influencing policy makers 63 Developing the relationship 64 Plan early 64 Research potential partners 64 Define mutual and shared objectives 65 Connecting with patient groups via a third-party 67 Choosing the right PR agency 67 Patient groups and DTC 67 Terminology 68 DTCA 68 DTCI 68 DTP 69 Scope for DTC 70 Regulatory concerns 70 A change of focus 70 Case studies: DTCI & DTP 71 The role of the Internet 72 DTC and branding 75 Working together 76 Lessons learned from the US 76 Physicians and DTC 77 Targeting to improve returns on the DTC investment 77 By specialty and region 77 By belief 78 By giving advance notice 78 By getting doctors involved 78 Other possibilities 79 Chapter 4 A Strategic Approach to Forming Pharma-Patient Group Relationships 82 Introduction 82 A step-by-step guide 82 Research potential partners 82 Understand their perspective 83 Be transparent about objectives 83 Respect 84 Get a commitment from senior management 84 Think long-term 85 Case study: the Health Coalition Initiative (UK) 85 Three guiding principles 86 Potential problems 87 Misunderstanding partners’ agendas 87 Starting the relationship too late 87 Relationships should be direct 87 Project evaluation 88 The PARTNERSHIP rules 88 Preparation 88 Agenda 88 Resources 89 Time 89 Neutral 89 External 89 Relationship 89 Shared learning 89 Human interest 90 Industry 90 Partnership 90 Chapter 5 The Future Outlook 92 Introduction 92 Potential areas of conflict 93 Potential areas of co-operation 93 Access 93 Product development 94 Disease profile 94 Informed patients 94 Steps to success 95 Think long-term 95 Respect the group’s independence 95 Understand and respect culture 95 Define the language 96 Future pharma company-patient group relationships 97 What determines the success of patient groups? 98 Disease characteristics 99 Degree of group organization 100 Future objectives 100 Disease expertise and patient information 101 Public credibility 102 Increased drug sales 104 Faster and more effective clinical trials 104 Disease awareness campaigns 105 Working with large disease associations 107 Working at the community level – an important alternative 107 Future channels between patients and pharma companies 108 Globalisation versus local focus 109 DTC marketing versus neutral disease campaigns 109 List of Figures Figure 1.1: Summary of future drivers of patient power 14 Figure 1.2: Building patient power through patient groups 16 Figure 1.3: The drivers of patient power in seven major markets 21 Figure 1.4: Summary of types of patient groups in the seven major markets 25 Figure 2.5: Screenshot: Coalition of National Cancer Cooperative Groups – TrialCheck 35 Figure 2.6: Screenshot: American Diabetes Association 40 Figure 3.7: Centralized system for reporting, maintaining and sharing information about patient group relationships across functions 55 Figure 3.8: Screenshot: GSK’s The Time is Right smoking cessation website 69 Figure 3.9: Screenshot: Novartis’ Stepwise campaign 72 Figure 3.10: Screenshot: Netdoctor Erectile Dysfunction Community 73 Figure 3.11: Screenshot: MS-gateway.com 74 Figure 4.12: Summary of drivers of successful pharma industry-patient group partnerships 86 Figure 5.13: Areas of potential breakdown in patient group-pharma company relationships 92 Figure 5.14: Information flow with and without patient groups 98 Figure 5.15: Effect of disease emotionalism and coverage of patient population on patient groups99 Figure 5.16: Summary of patient groups’ future impact on pharma companies 102 Figure 5.17: New opportunities for collaboration with patient groups 106 List of Tables Table 3.1: Summary of current European medicines advertising regulation 68