Market Report Source

Overview

Introduction
Datamonitor has identified the key trends and events that drive patient empowerment and impact the pharmaceutical industry. These range from the increased access to information via internet and the rising pressures of cost containment through to how patient empowerment is affecting access to drugs as well as changing pharmaceutical marketing strategies and their public image.

Scope of this report

• Overview of the key trends driving patient empowerment
• Overview of how empowered patients and patient advocacy groups can change healthcare outcomes including case studies
• Analysis of the marketing strategies that companies are using to address the rise in patient education and harness patient power
• Identification of future trends shaping evolution of patient empowerment

Research and analysis highlights
Increased access to the internet, the rising pressures of cost containment and the changing patient-physician relationship are the key factors driving the rise in patient empowerment. Disease characteristics are one of the key factors determining how powerful different patient groups are.

Empowered patients can influence most healthcare outcomes: access to drugs, reimbursement policies, approval of new drugs, clinical trial recruitment, patient compliance and prescription rates. However they can also lead to reduction in drug prices and negative publicity for the pharmaceutical industry.

Pharmaceutical companies are investing effort into harnessing patient power through working with patient advocacy groups. Legal restrictions and increased public scrutiny are limiting how companies can work with patient groups and communication of medical information is the main form of contact in Europe.

Key reasons to read this report

• Identify the key trends that are driving a rise in patient empowerment
• Understand how patient advocacy groups can affect the pharmaceutical industry
• Gain insight into how pharmaceutical companies are working with patient advocacy groups and how marketing strategies are becoming more patient-focused

Table of Contents

CHAPTER 1 EXECUTIVE SUMMARY

Scope of the report

Key findings

CHAPTER 2 INTRODUCTION TO PATIENT EMPOWERMENT

What is patient power?

How patient power is measured

Factors influencing patient empowerment

Increased access to information

The internet is an important tool for patient empowerment

Direct-to-consumer advertising

Healthcare systems: US versus EU

In the US there is an increasing out-of-pocket cost for the patients

Cost-containment measures in the EU are likely to shift the cost of healthcare to the patient

Differences in patient empowerment between the US and the EU

The nature of the disease

Life-threatening diseases with poor prognosis have higher prominence

Chronic non-urgent conditions affecting mostly older populations attract less public sympathy

Social implications of the disease are gaining importance

Rare and genetic diseases

Stigma has a dampening effect on patient power

The changing patient-physician relationship

How do these factors influence patient empowerment

Effect on patients asking for prescription of particular treatments

Overall trends in patient power

CHAPTER 3 PATIENT ADVOCACY GROUPS

What are patient advocacy groups and what do they do?

Patient education

Support for patients and caregivers

Fundraising

Lobbying

Patient representatives sit on boards of decision-making bodies

Characteristics of successful of PAGs

Empowered patients can change healthcare outcomes

Equal access to drugs

HIV/AIDS patients are very vocal and have achieved wider access to drugs

Postcode prescribing in the UK is leading to unfairness in access to drugs

Influence on reimbursement of expensive drugs

Multiple sclerosis patients in the UK have achieved reimbursement of disease-modifying therapies through risk-sharing schemes

NICE’s refusal to reimburse acetylcholine esterase inhibitors for mild Alzheimer’s disease has lead to legal action

Can empowered patients achieve reimbursement of lifestyle drugs?

Lobbying for reimbursement of costly therapies will remain one of the priorities of PAGs

More efficient clinical trial recruitment and design

PAGs’ websites can help disseminate information about clinical trials

Recruitment of subjects for clinical trials involving rare diseases is particularly challenging

Patient feedback on post-marketed drugs can lead to faster identification of previously unnoticed safety problems

Communicating results of clinical trials to the public through PAGs can reassure the patients and build trust

Faster approval times for drugs

HIV/AIDS activists were instrumental in the establishment of expanded access and expedited approval programs in the US

Empowered breast cancer patients won access to Herceptin for early breast cancer in record time in the UK

Early access to drugs is not without risks for both pharmaceutical companies and patients

Increased funding for research

Improved patient compliance

Discontinuation of obesity therapy could be solved through better patient education

Some causes of discontinuation of anti-psychotic drugs could be tackled through patient education

Empowered patients can lead to increased prescription rates and sales

Empowered patients can change healthcare outcomes in a way that is beneficial for both patients and drug producers

Case studies – outcomes beneficial for patients and the pharmaceutical industry

Herceptin and NICE in the UK

Disease-modifying agents for multiple sclerosis – risk-sharing scheme

Money-back scheme for Velcade for multiple myeloma

Activities of patient advocacy groups can have a negative impact on pharmaceutical companies

Threats – lowering drug prices

Case studies of damaging relationship with PAGs

Abbott’s Norvir for HIV/AIDS

Schering-Plough’s Rebetron for hepatitis C

Negative publicity can damage the reputation and public perception of pharmaceutical companies but can also impact sales

Working with patient advocacy groups – how to achieve a win-win situation

Effective communication and exchange of information is crucial

Involvement of pharmaceutical companies in PAGs’ disease awareness campaigns

PAGs can have a valuable input into pharmaceutical companies’ disease and drug websites

Patients can have a valuable input into clinical trial design

Listening to patients’ needs can lead to the optimization of treatments and better compliance

Co-ordinating activities

Nurturing the relationship

Dedicated patient advocacy group liaison personnel

Act early and think long term

Equal and independent partners

Sponsorship

Advantages of a patient-centric approach

The relationship between PAGs and pharmaceutical companies is under increased scrutiny

Disclosure of funding is crucial in order to maintain transparency

Tightening of regulations is used to ensure adherence to ethical codes of conduct

Communication with PAGs can improve company’s public image with the patients

Ideal PAG partner for collaboration with pharmaceutical companies

CHAPTER 4 MARKETING STRATEGIES IN A PATIENT-FOCUSED AGE

Shift towards consumer-focused healthcare

The internet as a marketing channel

DTC advertising

Not all therapy areas are suitable for DTC advertising

Brand versus disease awareness

Communication of medical information through PAGs is the only route for disseminating drug specific information in Europe

CHAPTER 5 THE FUTURE OF PATIENT EMPOWERMENT

Drivers and resistors of patient empowerment in the future

Patients’ desire to inform themselves and the availability of information through internet will continue to drive patient power

The aging population

Information overload – quality marks are needed

The cost-containment pressure contributes to rising patient power

In Europe cost-containment pressures will become more intense

Escalating costs of healthcare will push payers to limit availability of drugs

Direct-to-consumer advertising – any changes ahead?

Relationship between PAGs and the pharmaceutical industry will be closely watched

Cases to watch

Avastin and Erbitux are not approved for colorectal cancer

Court challenge for NICE’s ruling over acetylcholine esterase inhibitors for mild Alzheimer’s disease

NICE has blocked Macugen, and Lucentis is approved with restrictions

FDA’s decision not to approve prostate cancer drug Provenge angered patients

Patients are voicing their opinions regarding the legislation surrounding biosimilars

Consolidation of PAGs

Consolidation and collaboration have advantages but also challenges

CHAPTER 6 BIBLIOGRAPHY

Publications and online articles

Datamonitor resources

Websites

GLOSSARY

List of Figures

Figure 1: Drivers and resistors of patient empowerment

Figure 2: Internet penetration in the seven major markets

Figure 3: Disease characteristics influence the level of patient empowerment

Figure 4: Trends in patient power

Figure 5: Characteristics of a successful patient advocacy group

Figure 6: Empowered patients can change healthcare outcomes

Figure 7: Attributes of an ideal patient advocacy group for partnering with pharmaceutical companies

Figure 8: Drivers and resistors of patient power in the future