Advocacy relations: back to basics

The patient advocacy group (PAG) sector is a critical ally of the pharmaceutical industry, and both sectors are under significant pressure. Whether it’s securing optimal market access, or access to charitable funding, the industry and PAGs need each other’s support like never before. Yet within industry, there remains a general lack of understanding of PAG basics. While familiar with the need for transparency, common goals and long-term commitment, poor understanding of the basics can lead to poorly defined and delivered PAG engagement strategies and programmes.

For the pharmaceutical industry, continual change and adaptation are the norm. From medicines’ cost control, to new payer stakeholders to digital media, the pace of change is daunting. However, we are not alone. One of our most important allies – the PAG sector – is also undergoing its own period of radical change.

Arguably, and given the challenge of market access, partnerships with these third-party allies have never been more critical. Conversely, sweeping cuts to funding coupled with falls in charitable giving mean that the PAG sector has never been more in need of industry support. Yet, while industry-advocacy relations have come a long way in the last 30 years, they remain far from ideal. Some of this can be attributed to pharma’s lack of understanding of the basics of the PAG sector.

Patient advocacy group terminology, evolution, governance and funding arrangements are four key areas that are often misunderstood by industry. Yet, understanding these basics can help deliver better programmes and initiatives, while aiding identification of added value support that can be offered to PAGs in a time of great need.

Commenting on industry-advocacy dynamics, Alex Wyke, CEO of Patient View, an independent organisation that works closely with patients and with health and social campaigning groups worldwide, said, “There remains a level of ignorance among many in the industry about how to effectively engage and work with the EU and country specific patient advocacy communities. While there are many examples of good practice, advocacy community respect for the industry has dropped in the last two years. A better understanding of this community and their needs is the first step to building better long-term mutually beneficial partnerships”.

What are advocacy groups?
‘Advocacy groups’ is a collective term that describes a range of organisations that use various forms of advocacy to meet their organisations’ aims and objectives. They are occasionally referred to as the third sector as a means of delineating them from the public or private sector.

The evolution of a patient advocacy group
Understanding PAG evolution can provide an insight into the thinking and motivators of both volunteers and staff, through which more effective dialogue can be initiated. Although variable and transcending many years, a group’s evolution can be broadly categorised into a number of key stages:

1. An individual recognises the need to do something and acts on this
2. Like-minded individuals come together to share expertise collectively and deliver more
3. Raising a group’s profile and securing more funds to support its work
4. Greater professionalism and a more businesslike approach to operations
5. Registering as a charity
6. Geographical expansion and service diversification
7. Mergers and growth
8. Establishing international networks and influence.

Governance
Just like any commercial organisation, a PAG needs effective management and must adhere to the regulations that govern its operation. For example, in the UK, registered charities are regulated by the Charities Commission.

Charitable organisations are the group that the industry most often partners with, and they are governed by a board of directors or similar body. It is the responsibility of the board to set the strategic direction of an organisation and they comprise either non-executive or a mixture of executive and non-executive board members.

The executives are employees of the charity, while the non-executives provide a valuable external perspective and ensure that the executive members are supported and constructively challenged in their role.

In the PAG sector, the level of board involvement in the day-to-day running of an organisation varies considerably. 

Colin McGregor-Paterson, CEO, Oasis Partnership, a Buckinghamshire-based drug and alcohol charity said, “Understanding the interaction between those who run an organisation on a day-to-day basis and their board, is critical when proposing partnership programmes. For many organisations, board approval is needed before they partner with the private sector. This can add another layer of scrutiny and significantly delay approval and implementation of programmes”.

In considering PAG partnership programmes, understanding an organisation’s governance structure is therefore critical to managing expectations for both parties.

Funding
Patient advocacy groups obtain their funding from a wide range of sources in an effort to maximise income and strike a balance between different revenue sources. This in turn supports their longer-term financial viability. Some of the key sources of funding are:

• Government/EU grants
• Local authority and PCT contractual agreements and grants
• Fundraising activities
• Charitable donations
• Project funding
• Private sponsorship
• Sale of goods and services
• Charitable Trust Grants.

However, even with a range of revenue sources to tap into, the current funding environment remains extremely challenging and is a source of great concern for many in the PAG sector. Budget cuts, less charitable giving and the need to deliver more for less is resulting in service reconfiguration and prioritisation, mergers and closures.
However, riding to the financial rescue of a current, or future PAG ally, is not a viable option for the industry, while ensuring that an PAG partner is on a sound financial footing should now sadly be the norm.

How can the industry support the sector in cash poor times?
While financial support for PAGs has never been more important, given the breadth of skills and expertise within the pharmaceutical industry, there is so much more that can be offered.

Matt Phillips, Ex-UK Director of J&J and CEO of Engage Health Alliance, an organisation that brings together the advocacy community, policy makers and industry, said, “The pharma industry can offer so much more to the charitable sector than simply a blank cheque, or support for a specific project. Business planning, market research, public relations, insight into health service reforms, organisation and operational development and process and systems analytics are all skills that are important for charities. Unfortunately for many groups, these are areas which are not supported by their core funding, or they are skills that they simply cannot afford; and herein lay the opportunities”.

Understanding what added value a company can offer a PAG necessitates a deep understanding of an individual group’s needs and aspirations. This can only be achieved through in-depth discussion with the organisation itself. However, as a rule of thumb, support that enhances a group’s ability to adapt to a period of great change, or that enables them divert resources to elsewhere within the organisation, can add significant value to a partnership. This might include:

• Business planning support
• Marketing support
• Access to information and databases
• Resource production
• Organisational and operational development guidance
• Disease awareness programmes
• Access to industry partners and stakeholders
• Staff secondments.

Back to basics
There is no doubt that the PAG sector is undergoing a period of significant change; a change that is seriously impacting on some groups’ ability to deliver. With thirty years of partnership programmes behind us, now is the time for the pharmaceutical industry to refocus its thinking in support of the sector. Understanding the basics about pharma’s critical allies should be a prerequisite to this. This may be easier said than done, and the experience of the consultancy sector can add real value to PAG partnership programmes.

The author
Carsten Edwards, is Managing Partner, access services and Antonia Betts is Head of PR. They can be contacted at carsten.edwards@ogilvy.com and antonia.betts@ogilvy.com