Pharma-Patient group relationships

pharmafile | July 24, 2008 | Feature | Research and Development, Sales and Marketing |  industry relations, patient groups, pharma 

In the headlong race for global domination, pharma companies are in the process of flattening their hierarchies, slashing bureaucracy, streamlining their workforces, and firing off a battery of legal challenges to protect their patents.

However, the big names in pharma are also doing something else.

Mired in suspicion, corporate reputations in tatters, many forward-thinking companies have been taking a cold, hard look at their external communications.

The days when a company's central HQ just produced an annual review and maybe a corporate responsibility report are being superseded by a growth in corporate communications out in the affiliates.

Here in the United Kingdom, comms departments are swelling into sharply-focused teams looking to up the ante in their companies' relations with the outside world.

Stakeholder engagement has fast become a corporate watchword as leaders start to grasp the benefits of being aligned with external partners – to be perceived as part of the solution, not part of the problem.

The trend is summed up succinctly by AstraZeneca's chief executive David Brennan: "Our business activities touch many people's lives, including patients, physicians, shareholders, employees, regulators, partners, those who pay for healthcare and our local communities.

"Only by living up to our core values, in every decision, action and interaction with the world around us, can we maintain the trust of our stakeholders that is so vital to our reputation and our licence to do business."

Why bother?

Companies have to be bold, says Graham McMillan, chief executive of Open Road, corporate comms consultancy.

"When it comes to communicating with the outside world, pharma companies have an ingrained cautious nervousness," he says. "Although perfectly understandable, it can lead to a tendency to retreat into their shells when things go wrong. Institutional caution is one thing; outright fear of communicating with external stakeholders is another."

The reasons for companies to engage are legion, says Graham. "In business today, companies have no choice but to communicate. Transparency and openness have become a sine qua non for a responsible organisation; even a hint that a company is acting in a secretive manner will attract attention and suspicion.

"Developing relationships with a range of stakeholders, being open and transparent with them, is the best way to combat suspicion," he says.

There are two key benefits of good relations with external stakeholders, says Graham: understanding the external environment, and getting feedback on your activities and reputation.

"It is important to know the external agenda to counter the temptation of large organisations to be driven only by their internal agenda. It is impossible to formulate effective plans for the future without knowing what's happening outside your own walls. In addition, external stakeholders can provide very valuable feedback on what you're doing, how you're doing it, why you're doing it and what you should be aiming at in the future," says Graham.

Cutting through the static

In amongst the bewildering array of potential stakeholders, few are more important than patient organisations.

"Patient groups are very high up on the list," says Graham McMillan. "They may not have a direct commercial link but if a patient group says good things about you it brings real weight. Independent bodies are the most powerful and effective advocates; policy-makers, opinion-formers and the media all like to hear from real people and that means patients."

Pharmaceutical companies know this – after all, they have been working with patient organisations for years – but in the last five years in particular there has been a sea change in both the nature and the closeness of pharma-patient group relations.

Given this new landscape, it is time to ask whether companies are making the most of these important relationships and whether there are new possibilities yet to be discovered. For this feature, senior figures in eight major UK patient organisations gave their feedback on their relationships with pharmaceutical companies.

"In my eight years here at Cancerbackup, relations have changed massively," says Joanne Rule, the charity's chief executive, echoing the opinion of the majority. "Back then, you could be approached by a brand or product manager whose concerns were very narrowly focused and who would want to sit you in a darkened room and show you slides. That doesn't happen anymore. Our relationships are either with very senior people in companies or those with a strategic overview, such as senior marketers who oversee the entire oncology portfolio."

Another senior figure, and veteran of many struggles for patients' rights, is Lisa Power, director of policy at the Terrence Higgins Trust.

"I was involved in the European AIDS treatment group in the late nineties and I remember some extremely stormy meetings with companies who thought we were just a bunch of idiots. It has certainly been a long journey but the situation has greatly improved."

Michael Livingston, director of HEART UK, agrees that there is a new attitude. "There was a lot of money sloshing around in the old days and patient organisations were taken for a ride. Back then we were not particularly skilled at managing these relationships but, with new people on the block, there is a better understanding within companies that they have to work with everyone – with us, with government and with a range of organisations they may not have thought of in the past," he says.

Voicing the opinion of the senior people in patient groups, John Neate, chief executive of the Prostate Cancer Charity, finds relationships with companies useful. "We value the right kind of relationship," he says. "Clearly, the key driver for companies is the maximisation of profit but there are other, more laudable motives lying behind them. There is a mutual concern to ensure we get genuine advances in patient treatment and I would far rather have relationships with pharmaceutical companies than not have them."

Playing by the rules

With cordial relations and shared agendas, how are companies and patient organisations working together today?

"For us, there are three strands," says Sue Davie, chief executive of the Meningitis Trust. "Companies are a source of information for our helpline so we can provide the best information. Secondly, they can help us with networking, by opening doors and pointing us in the right direction to spread our message. The third angle is access to funds – pharmaceuticals make profits and have access to funds.

"I am not naive – I accept that pharmaceutical companies are commercial organisations and that it is in their interests to sell as much product as possible, but I do not feel that there is any conflict from our point of view," she says.

Most patient organisations have strict rules governing their relationships with companies. Director of marketing, Richard Donaldson, explains Asthma UK's guidelines.

"We have a policy in place to strictly protect our independence. Our safeguards are threefold: we publish details of all donations from pharmaceutical companies in the public arena, we limit the amount of money we receive to less than 10 percent of our annual income so we do not become over-reliant on a single source of funding, and finally we work with a range of companies. A number of companies work in the asthma field and last year we worked with seven," he says.

For both companies and patient groups, the primary driver of improved relations has been the push towards greater transparency.

"We have always taken issues of independence very seriously but now, since the changes to the Code of Practice, the industry is taking it much more seriously too," says Richard.

"We used to have long negotiations but since the changes, both parties recognise the need for full transparency and a written agreement."

Transparency is the key, agrees Maggie Alexander, director of policy and campaign at Breakthrough Breast Cancer, but there is wide variability.

"The situation varies from company to company. Some have a very clear understanding of our need for independence while with others our relationship is more of an evolving one," she says.

Although all patient groups agree that this new transparency has become a crucial and beneficial component of relations with companies, it has come at a cost, says Terrence Higgins' Lisa Power. "I understand why transparency is necessary but the paperwork and bureaucracy has removed a level of instant support or conversation we had with companies. It is ironic – the rules force companies to be more formal at the same time as companies actually want to be clearer and more open," she says.

Raising the bar

With transparent partnerships flourishing, is there more that pharmaceutical companies can do to help patient organisations?

"[Companies] are already starting to understand that they need to be more involved in wider health agendas but there is a problem with speed," says HEART UK's Michael Livingston. "We would like to do a lot more to tackle big issues but large organisations like pharma companies find it difficult to be flexible and to act quickly."

Pharma's poor reputation could be an obstacle, says John Neate from the Prostate Cancer Charity. "There is a real risk that if companies engage more with our agendas they could be criticised for trying to manipulate them. They are caught in a difficult place. From our point of view, the best option is for them to provide unrestricted, capacity-building income. I use the expression 'all boats rise with the rising tide' – if patient groups become more effective at promoting access to treatments, it benefits both patients and pharmaceutical producers."

Lisa Power of the Terrence Higgins Trust, however, would like companies to make more of their internal expertise available. "Some pharmaceutical companies look at the relationships as just giving us information and donating some money but there is much more they could do. I would like to spend more time talking to their government relations and public affairs people to find out what they are doing in our area but this happens far less than it used to."

Getting innovative

In the quest to stay in touch with the external environment, forward-thinking companies are taking bold steps. Pfizer, an acknowledged leader in external communications has recently launched Attracting Debate, a year-long, co-ordinated engagement programme aimed at a range of stakeholders including, crucially, patient organisations.

"We are operating in an environment that is changing very fast – if you want to be sustainable as a business you cannot make the right sorts of business decisions without genuinely understanding your external environment and the only way to do that is by talking to people," says Judith Luker, who heads up Pfizer UK's stakeholder communications.

Spearheading the programme is a publication, also entitled Attracting Debate, setting out the key issues Pfizer believes it faces as an organisation. This is then followed by a crucial face-to-face meeting.

"The publication is a prop to the conversation," says Judith. "We send it ahead of time to give them a chance to think about what issues they want to discuss, then we sit down and talk to stakeholders about the topics we have raised and also about their own issues."

Judith's team has already spoken to 50 patient groups. "They are telling us that they find the approach very refreshing, and these conversations have helped us take our relationship with patient organisations one step further because we are talking in a very candid way. Our routine business conversations with organisations are now much more open," she says.

Cancerbackup's Joanne Rule describes Pfizer's approach as interesting and says it bodes well for the future. "For a long time I have been saying that companies need to do something to differentiate themselves on particular issues. Attracting Debate is the first time a pharmaceutical company is acknowledging that stakeholder groups have been critical about them on specific issues in the past. I detect just the beginnings of an opening up, that companies are starting to take down the walls," she says.

"It's really important – the medicines industry should have a much better image than it does. It strikes me as crazy when we are criticised for taking money from the makers of anti-cancer drugs. If we took money from tobacco companies I could certainly see why we would be criticised but not for taking money from companies that make anti-cancer drugs. It looks like we are at the start of a really interesting tonal shift – it is very important for society that some of these issues are opened up and discussed."

Whether other companies follow Pfizer's example and engage with patient organisation through a co-ordinated programme is something only time will reveal but what is certain is that relations between pharma companies and patient organisations are much improved and on a stable footing.

With belts being tightened across the industry, external communications with key stakeholder groups could well become an extremely cost-effective way for companies to differentiate themselves and boost their competitiveness.

Box: Relations with patient groups: the rules of engagement

The industry code of conduct, the ABPI Code allows pharmaceutical companies to interact with patient or any other user organisations, such as disability, carer, family and consumer bodies, to support their work, as long as the involvement is declared and transparent (Set out in clause 20.3 of the Code).

Companies are required to list all patient organisations they support financially and must have a written agreement with each organisation, setting out exactly what has been agreed. In addition, any materials produced that relate to diseases or medicines must be certified (formally approved by two specialists in the Code on behalf of the company). The code also covers hospitality (ee clause 19), which states that it can only be provided at an 'appropriate level', in an appropriate venue and when it is secondary to the main purpose of a meeting.

In addition to the code, the ABPI has guiding principles for companies working with patient groups. ABPI members have agreed to abide by these principles as well as by the code. Visit www.abpi.org.uk to download these documents.

Hugh Gosling and Antonia Grey are the founders of contract publishing company Grey Gosling.