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Partnering patients

Develop long-term relationships with patient organisations to enhance understanding and outcomes

Partnering patientsHistorically, the patient end-customer has had little voice in the market access process of taking a drug to market: companies have focused their marketing efforts on prescribers and, more recently, have concentrated on payers and policymakers. Of course, there are cultural and regulatory barriers that make it difficult for pharma to interact directly with patients, but there are ways to work more effectively with patient organisations to improve understanding of the needs of patients, their carers and families.

There is no doubt that companies are now starting to focus more on servicing patients. In an October 2010 Eyeforpharma Patients' Week survey, 54 per cent of pharma respondents stated that patients were the most important customers, ahead of payers and physicians. There is also a growing recognition of the benefits of enabling patients to make informed healthcare choices and to be actively involved with their disease management.

There are several reasons for this new shift in emphasis. They include the growth of healthcare information online, the emergence of online pharmacies and the development of patient-to-patient communication via social media platforms. In addition, the shift is associated with new drug compliance and monitoring tools and an overall move towards more personalised medicine. Pharma and patient organisations can, and do, work together to shape these developments. Building stronger, long-term, synergistic relationships will ensure that working together will result in outputs that are of real benefit to patients.

Benefits for pharma
For pharma, the impacts and benefits of patient-centred programmes are much more than just a positive impact on short-term sales. Table 1 outlines the far-reaching benefits to be gained from engaging with patients in a more meaningful way.

Table 1. Long-term benefits for pharma of patient-centred programmes 

  • Builds a greater understanding of mutual needs

  • Builds trust, increases visibility and creates greater public awareness of company dedication to improving healthcare and supporting patients

  • Improves patient identification, thereby increasing access to appropriate treatment

  • Increases patient commitment to, and endorsement of, brands/products

  • Negates the poor quality information that is frequently found online, thus enabling patients to play a more active role in their health and to contribute to prevention, early diagnosis and better management of disease

  • Optimises appropriate use of drugs (education and support are fundamental to adherence, particularly for chronic conditions that can only be managed, not cured)

  • Provides a better understanding of patient sub-groups and how to treat them

  • Provides unique perspectives on the value of a product or disease area, including convenience, support for carers and broader societal costs, so helping to meet payer requirements (eg patient reported outcomes)

  • Allows a continuous feedback mechanism for disease area and product.

Recent initiatives
Healthcare providers and payers are starting to encourage people to manage their own health, particularly for chronic conditions. For example, the UK's Department of Health is currently piloting personal health budgets and the July 2010 NHS White Paper, Equity and excellence: Liberating the NHS, states, 'No decision about me, without me'. Governments are also investing in disease awareness and health literacy schemes to improve public understanding of complex health information. These include the European Union's Information to Patients Health Directive, which aims to improve Europe-wide patient access by providing high quality information about prescription medicines.

Regulatory authorities are engaging with patients more closely. In the US, the Food and Drug Administration (FDA) has started to capture adverse event data via online communities.

Pharmaceutical companies are investigating various patient-centred marketing initiatives, including patient access or risk share schemes with innovative pricing agreements. These will facilitate access to specific high-cost drugs or other technologies. Exploration of personalised medicine based on biomarkers is another example. In addition, companies are beginning to engage with patients directly via

social media platforms. An example of this is ManMOT, an online surgery funded by Pfizer and supported by five UK patient organisations.

The emergence of non-pharma websites is also encouraging patient proactivity. For example, Health Unlocked works with patient organisations to provide patient-centred strategies for data collection, online support, self-monitoring tools and so on. In the US, Patients Like Me is an online data-sharing platform for people with chronic conditions.

Important intermediary role
In many of these cases, patient organisations have a hugely important, intermediary role. Their mission is to listen to the needs of their patient members and develop projects based on those needs. Thus, they are ideally placed to build meaningful relationships with all stakeholders and to express a united patient voice. As such, they are key partners for the pharmaceutical industry.

Patient organisations are highly influential players in raising policy maker and public awareness about specific diseases and their burden on society. For example, the European Organisation of Rare Diseases (EURORDIS) works closely with the European Commission to raise awareness about rare diseases and orphan drugs. Similarly, the European Parkinson's Disease Association (EPDA) gathers the evidence to persuade policy makers to bring about changes that will improve patients' quality of life.

Meanwhile, for the wider public, patient organisations are increasing their presence on social network sites like Facebook, Twitter, Myspace and Bebo, as well as on patient forums, blogs and community message boards. For example, Diabetes UK supports the community message board Diabetes Support.

Furthermore, patient organisations provide the best source of real-world, patient-centred information with regard to public perception of specific diseases. A recent survey by the EPDA revealed a poor public understanding of the social and economic impact of Parkinson's disease. In response, the EPDA launched the Life with Parkinson's awareness campaign to address common misconceptions among the public and policy makers. Similarly, Asthma UK's Living on a Knife Edge campaign is being used as a call for action to improve the lives of people with asthma.

Patient organisations are powerful and effective advocates and can support disease area lobbying activities. They can individually and collectively lobby European and national governments so that politicians and decision makers are made fully aware of healthcare inequalities and are encouraged to implement changes in disease diagnosis and management.

The EPDA, for example, works closely with other related patient organisations (such as the European Patients Forum, European Disability Forum, European Federation of Neurological Associations) on areas of shared interest. This results in a huge network of contacts with a wide variety of experiences and a powerful patient voice. The EPDA European Move for Change initiative is an ongoing example of effecting effecting change through direct action.

Additionally, patient organisations contribute to medical education and continuing professional development programmes by providing an overall patient perspective and valuable information about a disease. A survey conducted by the German rare disease umbrella patient organisation ACHSE showed that many rare disease patient organisations are actively involved in educational activities for doctors and researchers specialising in their respective diseases (von Gizycki R. Contribution of rare disease patient organisations to medical education [2010]. Orphanet J Rare Dis; 5(Suppl 1): O25).

More to be done
It is vital that companies take a long-term view of improving healthcare for individuals. There is a need to focus on enhancing the patient's whole experience of drug therapy, not just the outcome.

The most effective and appropriate way for pharma to interact more closely with patients is by forging strong, long-term, mutually beneficial relationships with patient organisations. These organisations provide better understanding of patients' perspectives, needs, issues and expectations relating to their health, disease and management. They work continually and successfully to enable patients and provide a voice for them.

One of the best ways of supporting and strengthening patient organisation activities, and of helping to drive patient access, is for pharma to provide unrestricted funding.

Yet companies can offer so much more, including complementary skills, capabilities, technology and information to help patient organisations achieve their objectives.

By working as equal partners, disease awareness can be increased and patients can seek equity in care and gain access to the best and most appropriate products.

In addition, the industry should continue to support physicians with their doctor-patient collaborations in the most meaningful and time-efficient way. For example, through providing education on all aspects of disease management, not just on specific products, and offering innovative apps and websites to help improve communication between doctors and patients.

However, it is important that firm frameworks based on industry codes of practice and local requirements underpin all interactions. These will help ensure that collaborations are clearly defined, ethical, transparent, legally compliant and maintain the independence and accountability of both parties.

Case for engagement
There are compelling reasons for pharma to engage more with patients, and to strengthen relationships with national and patient organisations. However, at the same time, companies need to focus on the potential for creating long-term change and supporting sustainable strategies that allow for the best possible patient access and care.

As governments and healthcare providers concentrate increasingly on patient-centred care, there is an expectation that pharma will follow. Indeed, healthcare providers at all levels are expecting pharma to provide long-term commitment to disease areas, as well as potential care solutions. Assistance from patients is vital as they give a better understanding of disease burden, can indicate the level of potential risk versus benefit that they are willing to accept and what types of additional services they need.

Patient organisations are an integral part of the whole process. Since they are the 'experts' in patient access, pharma needs to develop and strengthen long-term, mutually beneficial relationships with patient organisations further. They are ambassadors for patients and can facilitate open communication between pharma companies and patients to ensure transparency, build trust and develop solutions. Partnership and working in synergy are the most effective ways to achieve patient access.

Pharma can support ongoing projects that have already been developed, and can also help to build totally new initiatives. Healthcare providers and consultancies play a vital role too. By acting as independent facilitators, they can help translate patient needs into materials that can be easily understood by the patients, and can devise specific solutions that address the many patient challenges.

Dr Beverly BarrKnut-Johan Onarheim
The Authors
Dr Beverly Barr
(left) is head of communications & external affairs, Pope Woodhead & Associates, as well as vicechair of the Pharmaceutical Marketing Society, and Knut-Johan Onarheim (right) is president of the European Parkinson's Disease Association.


11th July 2011


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