In the first of our new series of blog posts from members of our Global network, John Morton from Sydney-based Ethical Strategies PR Counsel discusses the shift in power and influence towards consumer advocacy groups
Recent events in Australia have confirmed the increasingly important role consumer health organisations play in the decision-making and negotiations that surround pharmaceutical reimbursement.
From cystic fibrosis to hepatitis C, it is patient groups that have taken the lead, become media focal points and helped inform political agendas relating to medicine access.
It would be naïve to suggest that these organisations do not interact with industry, but it’s important to recognise that their advocacy efforts have not been at the behest of companies, but rather in the interest of those they represent.
It is equally important to note how these groups have delivered their advocacy message – not by handing over their logo to front a company-funded report and media release, but rather through their own channels, contacts and initiative. The impact of their efforts is clear for all to see.
This is the brave new world of health advocacy, where many patient groups possess sufficient understanding of political processes and the machinations of pharmaceutical reimbursement to have moved from the sidelines onto the playing field. These are the groups that are increasingly communicating with the Federal Health Minister and his advisers, not to mention setting the media agenda.
Scan the newspapers on any given day and it’s clear that patient advocates capture the media’s attention and imagination, far more so than medical specialists or researchers. Why? Because these groups and individuals ensure news stories remain about real people with real needs, not about molecules and modes of action.
As such, companies intent on ‘working through’ patient support groups diminish the credibility and reach of their message. More savvy operators will seek to ‘work in parallel’ with increasingly sophisticated patient groups and their members. Working in parallel can mean partnering on a joint initiative, but it also means allowing the patient group to define and deliver its own message, in its own style and through its own channels.
This of course sounds ideal, but be warned – in our risk-averse world, some companies become anxious when they have to relinquish control. Good advisers will ensure these tendencies do not detract from the single most important aspect in securing medicine access – patients with serious medical issues conveying their hopes and expectations for something better.
These dynamics define the need for a mature, open and transparent relationship with patient groups where information exchange is non-ambiguous, timely and two-way.
Today’s environment requires that companies know when to stay close and when to stand back. This is only possible if companies understand the patient group’s broader goals and are equipped with the information and ideas that support these ambitions – not simply access to the latest treatment.
The other important observation from recent events is that anyone with a Facebook account and a bit of attitude is now an advocate with the ability to join the game and kick the ball – in any direction they see fit.
Thus, companies seeking to engage the modern consumer health organisation must take into account their increasing sophistication, political acumen and media profile. Companies armed with information and ideas that align with the patient group’s goals will find themselves working seamlessly towards a common advocacy outcome, rather than ending up sidelined.
John Morton is the Managing Director of Ethical Strategies and has consulted to a number of consumer health organisations, including Cystic Fibrosis Australia and Hepatitis Australia.