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Pharma's engagement with patient groups

A global survey of 850 patient groups highlights how patients would like pharma to engage with them

Enough has been written in the industry press to prove the point that alliances between pharma and patient groups provide mutual benefits. Today's pharma companies express an eagerness to associate with patient groups and many of pharma's enlightened leaders dedicate personnel to managing corporate-patient relations. Some companies – Novo Nordisk is a particular example – go so far as to emphasise the importance of placing patients at the heart of company strategy.

However, despite the goodwill from industry and patients alike, pharma companies remain traditional and conservative in their relationships with patient organisations, as can be seen from the following three pieces of evidence:

  • The research organisation PatientView estimates that millions of patient groups exist worldwide. Yet, even the largest, most patient-orientated drug companies number their affiliations with patient groups in the low hundreds
  • Given the move towards the decentralisation of healthcare management and services in almost every nation, pharma seems surprisingly reluctant to reach downwards to the smaller, local health-based non-governmental organisations (NGOs). These bodies are not staffed by executives concerned with policy formulation or with the lobbying of transnational organs of governance such as the European Commission, but are run by individuals operating at the front line of healthcare, working daily alongside patients. Local health NGOs possess unrivalled knowledge of patient needs that is invaluable when mapping patient trends
  • A communications revolution is gathering pace across the world of patients. Healthcare information is now accessed by smartphones and health apps. Back in the mid-1990s, the internet first began enabling patients to gather healthcare information previously only available to doctors. Then, about five or six years ago, blogs, microblogs, video blogs, and online diaries started allowing patients unprecedented access to the ideas and experiences of other patients and healthcare experts. Now, smartphones and health apps arm patients with tools that have a chance of improving both the self-management of their conditions and their clinical outcomes. These days, even the poorest members of society can afford smartphones and health apps, with many of the latter being free. Meanwhile, however, pharma, while fascinated with this latest twist to the patient e-health revolution, still appears to have little idea of how to become involved.

Many sound reasons explain the cautious approach of pharmaceutical companies to patients and patient groups. Legal barriers prevent drug companies from promoting products directly to consumers. Close connections with patient groups have, in the past, drawn criticism from the media, left-wing pressure groups and even from some health professionals. Sceptical onlookers may be hard to convince that drug company ties with patient groups can be altruistic. But these obstacles should not prevent pharma from expanding and improving its relationships with patient groups. One useful starting point is to ask the patient groups themselves what they seek from engagement with industry.

The patient viewpoint
So how could collaborations be made more successful and robust from a patient perspective? A PatientView survey conducted earlier in 2011 provides some of the answers. Some 850 international, national or large regional patients' groups, representing between them at least two million patients, were asked to comment on their current experiences of working with industry (including pharma). Over half (56 per cent) of the groups reported a current or previous relationship with pharma. Only five per cent of the sampled groups maintained a policy of not working with industry.

Percentage of patient group respondents rating their links with pharma as 'good' or 'very good'


The survey results contain better news for industry than might have been expected. For example, 85 per cent of the groups that co-operated with a drug company expressed themselves satisfied with their corporate partners.

The equivalent figure among groups partnering with medical device companies was lower, at 78 per cent. Experiences were best of all among patient groups based in the Netherlands; 95 per cent of the groups based there reported a 'good' or 'very good' relationship with pharma. The UK, too, ranked high, with 91 per cent of the 75 respondent UK groups emphasising a 'good' or 'very good' relationship. Poorest on the scale was Italy but, even there, as many as 75 per cent of the patient groups saw their relationships with pharma as 'good' or 'better than good'.

The patient groups responding to the survey identified seven key factors that influenced their organisations' willingness to work with a company:

  1. A company record of trustworthiness in relations with patient groups
  2. Clarity from a company about what it expects from a relationship with a patient group
  3. A strict company code of practice for working with patient groups
  4. The existence of obvious mutual interests between a company and a patient group
  5. A company record of treating patient groups as equals
  6. A company record of providing feedback to the patient group partners
  7. A company record of managing conflicts of interest in relations with patient groups.

Not surprisingly, corporate reputation, too, played a part in a patient group's willingness to become involved with a particular pharma company. The most vital consideration in corporate reputation, it reported, was 'having a good record on patient safety'. All of the groups based in Belgium, France and Luxembourg, and 94 per cent of the groups from eastern Europe, reiterated the importance of a partner company having a good record on patient safety. Regarded as less important was a company's ability to manage adverse news about its products. Only 52 per cent of patient groups (though 72 per cent of the groups in Germany) were concerned about this factor when assessing a company's corporate reputation. Patient groups exploited a variety of information sources, the chief of which was the medical professional, to help them formulate their impressions on corporate reputation.

Regulations set up by pharmaceutical trade bodies


One of the perennial questions bedevilling the drug companies that wish to work with patient groups is how to finance these partners. The survey findings offer some solutions. While the majority of respondent patient groups believed that the nature of financing would depend on the particular circumstances, 93 per cent thought that specific limits should be set on the levels of industry funding of patient groups as a proportion of that group's income. Just what that limit should be varied enormously from patient group to patient group. However, only 9 per cent of the respondents said that patient groups should not take any money from industry at all. The two forms of funding most acceptable to the patient groups were for specific projects and for the organisation's conferences and meetings.

The in-house regulations of each pharmaceutical company


The groups were asked to specify pharma companies that they believed excelled at relationships, although the numbers mentioned were too small to draw any solid conclusions. As one Italian cancer group, Associazione Donne Operate al Seno, noted when asked whether companies helped in the formation of successful relationships: "Yes, but only a few". Success, however, was broadly defined by patient groups, and included companies – not necessarily just pharma companies – providing tangible services to the patients or individuals the groups represented. For example, Föreningen Balans Sverige, a Stockholm-based mental health group, praised ICA AB, a Swedish food chain which was building a reputation as an employer of people with a disability.

Room for improvement
The surveyed groups also described several barriers to a successful working relationship. The one cited by most (76 per cent of the total sample, and by 87 per cent of Italian groups) was 'poor availability on the part of the company's contact person'. Poor corporate reputation was nominated as a barrier by 63 per cent of the groups.

Last, but not least, of the topics considered by the survey was the role that guidelines and regulations played in shaping and defining moral, principled relationships between industry and patient groups. Pharma trade bodies and individual companies around the world regularly contemplate the ethics of relationships. Larger pharma companies showcase the parameters by which they manage their associations with patient groups on their websites. But the big shock from the survey was that none of this soul-searching by industry matters much to patients. A mere 20 per cent of the groups said that the regulations set up by pharmaceutical trades bodies to govern industry-patient group interactions influenced them when forming relationships with pharma companies. By contrast, 61 per cent of the groups referred to the importance to them of their own organisation's in-house rules on the matter of relationships. As for the in-house regulations of each pharma company, only 27 per cent of patient groups believed that they had an effect on the groups when forming relationships with pharma.

Strategies for the future
What this survey shows is that pharmaceutical companies cannot develop strategies in isolation. Feedback from patients and patient groups should sit near the core of any planning scenarios that aim to reach out to patient groups. Companies today often talk with the leaders of the patient advocacy movement. But companies need to move out of their comfort zone. Those that do may be pleasantly surprised by the experience.

The Author

Dr Alexandra Wyke is CEO, PatientView and business director of Engage Health Alliance Europe

To comment on this article, please use the commenting feature below


17th November 2011


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