Understanding the aims of patients groups and, where appropriate, working with them has become a vital business aim for pharma compannies. Patient groups provide a number of valuable services to their members, ranging from advice, information provision and fundraising, to lobbying government and regulatory bodies and even financing their own research.

Providing information to their members is a particularly important part of a patient groups' mission. Within this area, patient groups, particularly those involved with a life-threatening illness or condition, have a duty to ensure patients' expectations of new and existing treatments are realistic.

The UK patient group picture

After significantly increasing in numbers during the 1980s and growing steadily ever since, there are currently more than 200 national patient organisations and support groups in the UK and many more local ones. The increase has been mirrored by the great strides that have been made in the understanding of different diseases. The 1980s was arguably the most fruitful time for the pharma industry in terms of new treatments coming to market, and as a result saw the biggest increase in the number of patient groups.

The website www.patient.co.uk claims to have details of nearly 2,000 UK patient support organisations, self-help groups, health and disease information providers, and similar organisations. Patient groups come in all shapes and sizes from Borderline UK, a user-led network of people diagnosed with borderline personality disorder (BPD) to the British Heart Foundation Society, which in 2000 commanded a budget of £102 million.

So, whatever the therapy area, there is likely to be a patient group that you could partner with, but what is the best way to do this?

Forming appropriate working relationships

Setting the right tone for your relationship is all important while your commerical concerns must be clear for all to see, no pharma company can succeed if it tries to force its own agenda on a patient group.  

Happily, pharma generally understands that working with patient groups is a distinctly separate activity from its predominantly sales-led marketing work. The same or similar teams may work on both but it is necessary to go about them in markedly different ways.

Paul Blackburn, director of PR agency Resolute Communications, says: "It's very important that any form of education for patient groups is done in a fair and balanced way, because you don't want to be promoting any particular product. But it is important that people understand all the products that are available or are coming to market."

The industry needs to ensure it does not engage with patient groups on a purely promotional basis, not just from an ethical standpoint but also to conform with the ABPI Code of Practice, which forbids marketing prescription-only products to the general public.

From a patient group's perspective, many of them are registered charities and, going back to impressions, one of the most important assets for any charity is its good name. It encourages financial donations from the public and business, lends respectability to its lobbying and campaigning efforts and guarantees impartiality for its information providing services for its members.

It is this good name that pharma companies must not compromise for the patient groups' sake as well as their own - no one will have much faith in a patient group that is an obvious stooge for the industry. This is why patient groups are increasingly developing their own policies for working with the industry in an ethical manner.

Multiple sclerosis and pharma companies

The MS Society is one such patient group, having established its own rules for working with pharma companies in 1999. The Society's chief executive Mike Richards explains: "Before 1995 there was little or no contact between the MS Society and the pharmaceutical industry because the industry frankly wasn't particularly interested in people with MS - it wasn't a high profile therapy area. But then along came the so-called disease-modifying drugs, beta interferon and Copaxone and clearly we wanted those to be available for people with MS, as did the pharma companies involved. So we had to have an understanding of what our formal relationship should be for then and the future."

Although the companies that are likely to have an interest in working with the MS Society number no more than six at present, the charity ensures it is in contact with all of them and aims to work with as many different companies as possible to avoid potential accusations of bias in its work.

"We certainly don't want to be seen to be tied in any way to one particular company so we want to work with them all," Richards says.

The main area in which the Society works with the industry is in its Fast Track Fund. The Fund aims to place more MS specialist nurses into the NHS and is invested in by both the MS Society and participating pharma companies. Money from the fund is used to recruit, train and pay for part of the cost of those nurses in the expectation that they will ultimately be added to the NHS payroll.

"This is a new thing for us. We wanted more nurses in the NHS and we had a mutual interest in making that happen," Richards adds.

One of the Society's conditions is that the nurses supported by the Fund must work on general matters related to people with MS and not focus on issues related to the prescribing of drugs. The Society has worked out an agreement to this effect with participating drug companies.

"Those companies that are contributing to the fund must accept that these nurses are going to do general work and they are not going to be promoters of their products and the companies are happy with that," Richards explains.

Since its inception in 1999 the Fast Track Fund has provided 26 nurses. Although it is the main point of interaction between the Society and pharma companies, they also work together on an ad hoc basis, for example by sponsoring an educational brochure or meeting.

On the question of how the industry's funding assistance might be viewed, Richards says that it isn't a problem for the MS Society's audience.

"We are open about the fact that the Fast Track Fund is partially funded by pharmaceutical companies, but it's not only one company and there is an obvious benefit for everybody affected by MS.

The benefits of working with patient groups

There is a general recognition by pharma companies that patient groups are important conveyers of information to all sorts of target groups. Therefore it is important that they are included in any communications programme or plan, but it is just as important that you approach this in the right way.

Resolute's Blackburn comments: "Pharma can achieve a tremendous amount by working with patient groups, as can the groups themselves. For the pharmaceutical company it really is important to make sure that patient groups understand about the product and what is involved in the management of a disease, in a fair and balanced way."

In terms of how to work with patient groups, Richards suggests that, as is the case with patient groups themselves, pharma companies should have very clear internal ground rules for working with patient groups to ensure that there are no misunderstandings.

"It's vital that at all times they should avoid either being seen to, or actually in any way being said to, promote any particular product," he says. "Our attitude towards products is that we make information about them available to our members but we are a source of information - we don't endorse anything."

This usually results in most patient groups trying to work with more than one pharma company on large projects.

Pharma companies and the agencies that they work with are usually aware of the potential pitfalls of working with patient groups.

"Public relations companies in their dealings with patient groups realise that we are not trying to sell the brand - we're trying to put things into context and that is a much better place to be," says Blackburn.

Ensuring your efforts don't backfire

Despite these internal guidelines, pharma is potentially at risk of accusations of self-promotion in any initiative it undertakes with a patient group. An April 2003 Which? article entitled Who's injecting the cash? suggested that 'money from drug companies could do patient groups and patients more harm than good'.

The article said that when patient groups accept funds from pharma companies it 'inevitably raises questions about an organisation's independence'. The article added that pharma funding for patient groups could influence the information they provide and lead to patients being misled or poorly informed.

Which?'s editor Helen Parker commented at the time: "We'd like all patient organisations to list their donor and make funding policies widely available. Policies should deal with the issue of funding from drug companies, and give clear examples of the sort of initiative they would accept. We think organisations should avoid any direct sponsorship that could cast doubts over their independence."

The line between promotion or education of a disease area, and self-promotion, therefore remains very fine.

"Provided you are very ethical in your approach and your communications are very much for an educational nature and that you embrace all the different treatments that are available in this fair and balanced way, then there is no reason not to ensure that these patient groups are kept in the loop," says Blackburn.

Ultimately, patient groups want their members to have access to the most up to date and efficacious treatments, regardless of cost, and, unsurprisingly, so do the pharma companies that produce them.

Win-win relationships

While this presents a number of challenges for how relationships are conducted, both side's aims and expectations can usually be met. It would, however, certainly help if pharma companies had set policies in place for working with patient groups.

Patient groups do generally desire to work with the industry and because of those shared goals, they also have a fervent wish not to become part of the industry's marketing machine.

A charity's good name is one of its most important assets and working with the industry must not compromise this.