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Bringing PR in from the cold

Patient advocacy and role of PR in market access

In response to emerging market access hurdles, the pharmaceutical industry has undergone and continues to undergo significant transition. Market access excellence now represents the single most important organisational challenge for companies today. But in a world where affordability issues are abundant, well resourced and competent market access functions do not always guarantee patient access to new treatments, especially when the majority of pharmaceutical innovation is incremental.

While we all accept the need to manage healthcare costs, we also agree collectively that decisions regarding what might and what might not be paid for by society should not be left to payers alone. For the industry that means that we need to communicate to all stakeholder groups that have a role to play in the delivery and consumption of healthcare. Critically, this should include the patient advocacy sector.

There is no doubt that as a discipline, when it comes to market access, PR has been watching from the sidelines. Support has generally focussed on media relations around key regulatory and reimbursement milestones, or support for internal communication regarding a particular reimbursement challenge or success. Now is the time for PR professionals, with their expertise in patient advocacy group (PAG) relations, to come in from the cold.

Patient advocacy groups and market access
It is widely accepted that patient involvement and choice in their healthcare improves patient outcomes, while delivering better services and cost efficiencies. Whether choosing which health insurer to sign up with, deciding which hospital to attend or actively participating in treatment decisions, the patient as a positive driver of change is here to stay. Engaging with these 'Expert Patients' directly is not practical for the industry, but the PAG sector are the most appropriate representatives of patients to engage with. However, a word of caution here, while PAGs represent their view of patients, their opinion is not always representative of all patients.

In terms of market access, the role of PAGs has and will continue to evolve. In the last five years, PAGs have become critical partners in supporting payers in their informed decision making regarding pricing & reimbursement, formulary and protocol inclusion.

In many countries, seeking the opinion of those who represent patients is an integral component in stakeholder considerations regarding access to treatment and the provision of services. The table below details some of those stakeholders who seek PAG input and those areas where PAG influence can be considerable.

Seekers of PAG opinion and insight
Areas of PAG input
  • Government agencies

  • Political and lobbying organisation

  • Health technology assessment (HTA) and pricing and reimbursement bodies

  • Adult social care and community based organisations

  • Commissioners of services

  • National and local guidelines

  • Local health priorities

  • Concordance and persistence programmes

  • Patient and partner support

  • Community and hospital based service provision

  • Driving patient presentation

  • Treatment choice

  • Disease awareness programmes

  • Clinical trial recruitment and retention

Patient advocacy group partnerships
The industry has many years of experience in delivering a wide range of PAG partnership programmes, the key focus of which have more often than not been disease awareness programmes. However, when it comes to partnering with PAGs in support of market access there are a range of additional factors that need to be considered.

Commenting on the increasing role of PAGs in support of patient access to medicines, Jeremy White, director, European Market Access at Biogen Idec International said, “HTA techniques are now applied, at least partially, in reimbursement decision making across most European healthcare systems. The dissemination and implementation of HTA agencies guidance is more variable. Public pressure to improve accountability and transparency around healthcare funding has grown consistently at national and regional levels, as with other areas of public expenditure. HTA exacerbates this trend as it draws a broad range of stakeholders into the assessment process.

“All stakeholders need to be able to understand the rational basis for decision-making around new product assessments if a level of consensus is to be achieved. Decisions need to be informed by a 'reference case' – an explanation of the general terms of reference used to rationally allocate funding to help build consistency.

“Patients and patient groups have been particularly effective at engaging in HTA product assessments, forcing a patient perspective into the assessment, and using product assessments to galvanise their broader campaigns”.

Building PAG partnership programmes
In considering partnerships with PAGs in support of market access activities there are a number of important considerations.

  • Secure internal alignment behind the benefits of partnering with PAGs
  • Understand the external environment
  • Planning and messaging
  • Credibility and transparency
  • Evaluation and continuous learning

Secure internal alignment behind the benefits of partnering with PAGs

Business units within industry have often worked in silos, but it is more important than ever to ensure that all those involved in market access understand the role of PAGs and are supportive of any partnership with them. Working relationships with PAGs have historically sat within PR departments and it would be advantageous to bring these communicators on board as part of discussion about PAGs. More importantly, however, as expert communicators they will help to drive internal alignment.

The following steps should be considered to achieve internal alignment:

  1. Internal audit of skills and attitudes
  2. Clear guidelines and lines of accountability
  3. Sell the benefits of PAG strategies and programmes
  4. Up skill those who will engage with and work with PAGs

Understand the external environment
Before engaging with any PAGs it is important to have a good understanding of the external environment in relation to market access and the role of PAGs within this. Close working with marketing and PR colleagues will be critical for this.

Areas to consider include:

  • Who the key payer stakeholders are and who they turn to support their informed decision making?
  • Which organisation, groups and committees does the PAG actively contribute to?
  • What is the reach, sophistication and influence of the PAG in terms of market access?
  • Where have PAGs been influential in supporting payer informed decision making previously and how did they achieve this?
  • Identification of clear common agendas and messages

Planning and messaging
With a good understanding of the who and the what, now it is time to consider the why and how. What is it that the PAG will be asked to action and what messages might they consider delivering?

As with all PAG partnership programmes, the identification of common agendas is absolutely critical and this should be identified in close collaboration with the PAG.

It is also important to provide PAGs with appropriate messages and materials that will support them in their activity and this is where the PR professional skills at message generation should be highly valued.

Commenting on the importance of tailored messaging, Dr Eric Noehrenberg, Director Public Affairs, Market Access, Shire Pharmaceuticals said “In support of our colleagues we provide a wide range of value messages within our global value dossier, but it is important that market access colleagues engage with their communication teams to review and adapt these for broader stakeholders, such as patient advocacy groups, to reflect the interests of their audience”.

Credibility and transparency
What remains an ongoing challenge is PAG scepticism and cautiousness to working in partnership with Industry. This can be overcome through clear and transparent communications and the following are the basic considerations when partnering with PAGs:

  • Clear terms of reference
  • Regular written communication
  • Clear external messages regarding the company's activities with PAGs
  • Share data when you can and explain when you can't
  • No surprises and manage expectations

Commenting on the importance of transparency, Alex Wyke, CEO of Patient View said “The patient advocacy sector activity engages in discussions around market access at a range of levels. However, it is important that they maintain their credibility at all times. Therefore, complete transparency is critical when they work with, or seek information from the pharmaceutical sector.”

Evaluation and continuous learning
Building and retaining loyalty with PAGs can only be done through continual and honest evaluation. This includes internal evaluation of the success of activities, recognise where best practice has been achieved and ensure effective communication of this internally. But evaluation should also extend to the PAGs themselves to ensure ongoing mutual benefit and understanding.

It is no surprise that the power of PAGs is increasing at both local and international levels. As natural allies, industry and PAGs both appreciate healthcare as an investment in health rather than simply a cost. However, it is only by bringing PR in from the cold to support stakeholder relations and messaging, that true value can be effectively communicated. Only then can industry work to deliver productive and mutually beneficial partnerships.

The Authors:
Carsten Edwards is managing partner of market access at Ogilvy Healthworld and can be contacted at; Antonia Betts is managing director of PR at Ogilvy Healthworld and can be contacted at and Claire Greeff is business partner at Ogilvy Healthworld and can be reached at

14th May 2012

From: Marketing



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