Managing Relationships with Patient Advocacy Groups

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Building and maintaining close relationships with important constituencies of their business networks is a critical aspect of the Strategic CRM practices of pharmaceutical companies (PharmCo). Medical practitioners, governments, hospitals, pharmacists and patients are all important constituents, but perhaps the most challenging relationship is with the patient, simply because they are so many, dispersed and diverse. That is why PharmCo needs to understand and build relationships with Patient Advocacy Groups (PAG).

The mission of all PAGs is to represent, advance and advocate the collective interests of those who suffer from a particular disease. PAGs are organized as national and international bodies. There are thousands of them globally. In the US, for example, there is the American Liver Foundation; in the UK there is the British Lung Foundation; in Australia there is the Australian IntersexGroup. PAGs are learning that they have more influence if they form multinational PAG alliances. An example is the International Diabetes Federation, which is comprised of over 200 different associations in 160 countries.

Why build relationships with PAGs

PharmCo typically has a number of reasons for building relationships with PAGs.

First, product-related, and disease-related, information can be provided to the PAG executive, for use in outbound communications to PAG members, including patients, advocates and doctors. Educational programs constructed and delivered by PharmCo are often seen as self-serving, but if they are delivered by respected third party organizations, the information may be viewed more as a public service educational effort, and less as a sales pitch. Communications through PAGs are seen as more credible and independent.

Second, PharmCo wants to build awareness about the disease and its treatment. Raising awareness could mean that some sufferers currently not being treated for the condition will seek treatment, and that patients will continue to take medication for the entire duration of the treatment regimen, thus improving compliance.

Third, PharmCo can benefit from PAGs’ expertise at localising information on pharmaceutical products. Much of the world’s drug innovation occurs in the USA. US-based company sites, discussion groups, advertisements and drug-specific sites provide non-US browsers with access to extensive information. However, that information may be inappropriate for those markets, causing considerable confusion, particularly where drugs have different names or where the indications permitted by the US’s FDA differ from those permitted in other countries.

Fourth, a constructive and mutually beneficial relationship with a PAG can contribute to PharmCo’s corporate image and reputation among consumers, advocates and the medical community.

Fifth, PharmCo can learn from PAGs. PAGs acquire, analyse and publish statistical information about the disease; PAG members are able to report their experiences with drugs and to participate in therapeutic research. Some PAGs devote considerable funds to research their particular disease, their most important contribution being their accumulated knowledge of how patients perceive their condition and its management.

Finally, PharmCo/PAG coalitions can effectively expand PharmCo’s resources in Government relations or lobbying. PAGs are having a growing impact on legislative bodies and Government agencies through their own policy arms. In the UK, almost 70% of PAG funding comes from Government, and this has lead PAGs to develop policy arms and employ lobby specialists, especially those who have close relationships with the National Health Service (NHS), which, in the UK, is effectively the sole purchaser of prescription medicines.

PAG mission

Relationships are two-way affairs, so if PharmCo wants to build closer relationships with PAGs it has to understand what each PAG is trying to achieve, what it may contribute, and how it must behave. PAG mission statements suggest that there are a number of core activities that are common to the sector. PharmCo needs to appreciate that a successful engagement with a PAG is one which contributes to that mission.

PAGs can and do benefit from their relationships with PharmCo by providing resources for joint or PAG activities. PharmCo can provide reliable, accurate and timely information that helps in the care of people suffering from the disease. They can support the advocacy efforts of PAGs, even when it may have little or no effect on corporate profits. PharmCo can also join with the PAG to fund research or educational activities.

Like many relationships, PharmCo-PAG relationships can be conflicted. At the heart of this matter is the different modus operandi of the partners. PharmCo’s for-profit organizations; PAGs are not-for-profits.

Many PharmCo businesses have developed formal statements about how they will interact with PAGs. GlaxoSmithKline (GSK), for example, has published these guiding principles:

  • The independence of patient groups shall be assured
  • Transparency is vital
  • Relationships must be based on trust and mutual respect
  • We aim to develop sustained, mutually beneficial, long-term working relationships
  • GSK will always comply with local laws and ethical standards

Notwithstanding these stated principles, there is still a good deal of public concern about the relationship between PAGs and PharmCo. In Australia, for example, many PAGs have become largely if not totally reliant on PharmCo money to support their core operations, prompting concerns they are open to pressure from companies to push their products.

There is, indeed, some worrying evidence of possible conflicts. An investigation by The Age newspaper reported that an awareness campaign run by the National Asthma Council was spearheaded by a cartoon dragon that was the registered trademark of one particular drug company marketing asthma medication. It also found that another drug company used a public relations firm to persuade people to vaccinate against hepatitis A and B. Hep C wasn’t mentioned, as the company didn’t sell a vaccine for that particular disease.

PAGs want PharmCo to recognise and respect the role of PAGs and the importance of their agendas, and to help them maintain the only real capital they can control: their integrity, credibility and independence. By not asking PAGs to compromise on those principles, pharmaceutical companies help PAGs remain strong and thereby be a better, more effective partner in collaborative activities.

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