Are patient groups the 'unwitting footsoldiers' for the drugs industry? Are medical charities stooges for the pharmaceutical industry? These are the issues that the Parliamentary Select Committee investigating 'The Influence of the Pharmaceutical Industry' wanted addressed earlier this year. MPs adopted a critical line towards selected relationships and practices during this inquiry, upon whose recommendations the Government is expected to act shortly. It is this issue that continues to unsettle many pharma PROs, as their communications are placed under pressure.
With pharmas increasingly concerned with corporate governance - doing the right thing, and being seen to do the right thing - the principal question is whether drugs firms need to be more transparent.
The influence of drugs companies on patient groups was one of the most significant tenets of the inquiry. The issue is neither new, nor endemic, but there is the belief among some PROs that further regulation looms.
At the moment, the Association of the British Pharmaceutical Industry's (ABPI) code of practice reflects UK and EU legislation, which prohibits undertaking, or sponsoring, activity deemed to be promoting prescription-only medicine (and certain other medicines) to the public.
The ABPI does acknowledge that its members and patient groups need to 'think carefully' about joint initiatives that 'open both parties to reasonable questions about these funding arrangements and any undue influence they might have'. Yet there are more than 200 national patient bodies and support groups in the UK.
Co-working can undoubtedly generate benefits for both patients and drugs firms, something many believe the MPs were reluctant to acknowledge. And it should be stressed that the cash given by drugs firms to patient groups is usually small, typically being spent on, say, information leaflets.
Organisations such as the Charity Commission already provide guidelines for voluntary organisations in this area.
Some patient groups would struggle to exist without pharma backing, while some are founded by drugs firms - it is often here that controversy inadvertently arises.
Ogilvy Healthworld European president Margot James, one of the inquiry witnesses, admits that despite 'confident self-regulation' there are 'isolated incidents of bad practice'.
Fleishman-Hillard UK healthcare head Michael Smeeth agrees, saying: 'It only takes one or two isolated cases to tarnish the credibility and reputation of the many. Patient groups and drug firms must be open and transparent in their dealings to help reassure people by openly dispelling any negative preconceptions they may have.'
The Long Term Medical Conditions Alliance (LMCA) is another organisation that offers guidelines to patient groups. CEO David Pink says: 'There is a big variation in how patient groups deal with firms, and very small ones often don't have sophisticated policies.'
Such is the sensitivity in this area, Packer Forbes Communications MD Alexa Forbes argues that some groups 'shy away' from activity with drugs firms 'purely out of fear that their motives will be misunderstood'.
One of the highest-profile examples of controversy came just over five years ago. The Multiple Sclerosis Society complained that websites funded by Biogen and Schering Healthcare implied that patient groups were campaigning independently for beta-interferon to be made available to all MS sufferers, whereas the campaigns were actually run by the firms themselves. Biogen - then promoted by Jo Spink PR - was forced to pull its 'Action for Access' campaign, while Schering withdrew its 'MS Voice' site.
Schering reportedly admitted no patients were involved in its patient group, while Biogen said patients were involved in its campaign but could not provide any names. Both companies insisted they had done no wrong.
Lack of support
Reflecting on the incident, Jo Spink - MD of the now-rebranded Spink Consumer Healthcare - says: 'Lack of patient support was the final nail in the coffin. We couldn't be seen to be publicly fighting (the MS Society); it wouldn't have been good for anyone.'
The MS Society continues to work with companies, including Biogen, but spokesman David Harrison says the group has 'very little' funding from the pharmaceutical industry.
Elsewhere, US biotech firm Digene and Burson-Marsteller provide a more recent example of a campaign attracting negative headlines. B-M Brussels was manning a secretariat for lobbying group European Women for Human Papilloma Virus Testing, calling for a new NHS screening test.
The Observer claimed celebrities had been 'duped' into supporting a PR push it described as 'secretly orchestrated'. More than a year on B-M, which at the time threatened legal proceedings over the story, defends its campaign as 'responsible'. It insists: 'We clearly indicated that the work of celebrity women was financially supported by Digene.'
One indication of how total transparency is still some way off, however, is that of 125 patient organisation websites assessed in a 2003 Health Which?
report, donors were listed on just 32. Yet from the industry's perspective, in something of a watershed move, AstraZeneca and GlaxoSmithKline are creating public access websites on their dealings with, and donations to, patient groups (see Healthcare, p11).
Among the patient groups, Diabetes UK and the Alzheimer's Society publicly declare their protocol in this area. The former's director of membership and marketing, Dawn Jackson, points out that 'policies across the sector vary', and says the inquiry should 'prompt those without policies to take action'.
The Alzheimer's Society revised its code of practice in March after 'a lot of internal debate', says head of public affairs Julia Cream. She concedes: 'We have a reputation for not working with pharma firms, but that's because we are strict.' Five companies - Novartis, Pfizer, Shire Pharmaceuticals, Eisai and Lundbeck - teamed up with the society last month to pilot an awareness campaign in Yorkshire and Shropshire, involving a vast information drop. It is the first time the charity has worked in this way and was agreed after more than 12 months' negotiation.
Cream describes the claims that patient groups are footsoldiers as an 'easy and cheap' accusation, adding: 'Less than one per cent of our funds comes from pharma companies. But it is incredibly valuable. We couldn't have afforded to do this work without it.'
Karen Winterhalter, director at consultancy Onyx Health, is also executive director of Women's Health Concern. Regarding this latter role, she says: 'We make sure our funding from industry is not more than 20 per cent of our income. Some organisations have a high level of suspicion of the industry's motivations. I think this is purely due to their lack of experience or exposure to the industry.
Rather than act like the guilty party with some dirty secret, we should actively promote collaboration.'
For any patient group, being seen as independent is paramount to credibility. They may have been initially funded by a sole sponsor, particularly in disease areas where there is just one treatment option, but the normal pattern is for a co-sponsorship structure to be set up post-launch. HSD Communications MD Lesley Scott points out that a patient group's relations with corporates largely depend on the trustees' and CEO's vision. Scott says: 'There has to be a balance to maintain credibility and independence: this is where boundaries can get blurred.'
Looking forward, Virgo Health PR joint MD Angie Wiles believes if firms and patient groups can identify health comms opportunities of mutual interest - without the 'forbidden' direct brand promotion and with overt transparency - this could continue 'for the benefit of all'. The MPs recommended against limiting or legislating against corporate support for patient groups - but they did advise that 'measures to limit the influence of industry are needed'.
Despite this, most believe little fundamental change is likely. What is certain is that both sides are under increasing pressure to declare all details about the nature and extent of joint initiatives.