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Natural allies

Why should pharma partner with patient groups?

Two children in superhero outiftsPatients, more than any other healthcare stakeholder, share similar ambitions with pharma. Yet pharma has still to embrace these potential allies fully. With the armies of patient advocates on the rise, so too are the opportunities for beneficial partnerships with pharma. This article provides some ideas as to how PR agencies might help pharma customers benefit from an underused resource.

The many characters on the healthcare scene should theoretically be pursuing a common laudable agenda – improved healthcare and better health for the people. In practice, however, healthcare stakeholders tend to be at loggerheads. On one side are the players who see healthcare as a valuable social investment worth expanding. On the other are those who – like policymakers, governments, insurers, healthcare payers and sometimes providers – regard healthcare as a cost that must continuously be curbed.

The latter fear the financial pressures imposed upon them by patient demand for top-quality healthcare and by a profit-conscious industry. Patients and pharma alike, by contrast, claim membership of the first camp. Each seeks to promote patient access to state-of-the-art healthcare technologies. For this reason alone, patients and pharma make natural allies.

An overlooked opportunity
Despite sharing mutual interests with patients, pharma's current level of involvement with its ultimate customers (and with their representative patient groups) can only be described as nominal. Millions of patient groups exist worldwide, yet just a small proportion has any regular relationships with pharma. A December 2009 HSCNews International survey into patient groups' views of pharma found that just 22 per cent of the 665 respondent groups maintained routine contact with a pharma company.

Although several of the survey's respondent patient groups insisted that they were opposed to the idea of working with pharma, many more told the survey that they wanted to forge ties with industry, but were unable to do so because they believed themselves unattractive to pharma. Some of these said that their specialty fell outside the range of any drug-company product portfolio. Still more felt that they lacked sufficient national or international presence to prove interesting to pharma companies. Many nevertheless added that they were well qualified to be pharma industry partners. As one patient group commented: "Just because we are small does not mean that we do not have clout."

Even when long-standing liaisons do develop between industry and patient groups, these can sour if the pharma company fails to keep in touch with the patient group reasonably often, or lacks understanding of the patient group's aims and missions. A further problem reported by respondents to the HSCNews December 2009 survey occurs when a pharma company tries to dominate its alliance with a patient group, to the latter's annoyance. Distrust can certainly surface in patient group/industry affiliations. A number of patient groups harbour a suspicion that pharma is only interested in partnerships with them if an increased financial return is the likely result for the company. A migraine group told the HSCNews survey: "Pharma does not engage with us unless they want us to help them in clinical trial recruitment, or in increasing their sales". Other groups believe that pharma companies are not always wholly honest in their exchanges with patient groups, particularly about competitors' products.

A business stratagem
Articles in Communiqué have frequently emphasised that PR agencies function as bridge builders between the corporate and the larger world. Today, all manner of health NGOs seek to establish some level of co-operation with industry, and they usually hold clear ideas how pharma might back them up – beyond the act of simply supplying money. Although pharma relationships with patient groups are strictly regulated and controlled by government or their tradesbodies, the suggestions made by patient groups do provide a valuable pointer as to the nature of partnerships patient groups would like to cultivate.

Thus a fibromyalgia group, for instance, suggested to the HSCNews survey that industry and patient groups should "work together to find functioning combination therapies, rather than only focusing on one drug a time".

Innovative PR agencies could encourage such a move, to the advantage of their customers (and to the customers' patient group partners).

If the industry would but open a meaningful dialogue, other patient groups are offering to assist pharma build a deeper awareness of the needs of real patients. These discussions, which could promote the output of drugs that provide genuine user satisfaction, may be fruitful for many of the activities of pharma companies (including R&D).

As one UK diabetes group replying to the survey emphasised: "Please provide what patients want, and not what the company merely thinks patients want." A UK disability group invited industry to "come talk to us. We, like most organisations dealing with long-term disability, are only too happy to help, given the chance." And a local group with close connections to the UK's National Health Service (NHS) advised pharma to "work more closely with community groups such as ours, so that we have a better understanding of each other, and gain rapport."

Patient groups crave patient-oriented information from pharma, and the data they seek goes beyond what industry presently supplies. A local healthcare group explained to the HSCNews survey: "Make all patients and the public aware of what companies are researching, make them aware of new drugs/medicines, and give them the necessary information to reach an informed decision – bearing in mind how products are priced (including how much profit is being made)". Patient groups also want details delivered outside the conventional vehicles of printed leaflets, brochures, or posters. A diabetes group requested: "More information to patients in non-written formats, such as speakers, forums, and interactive sessions".

A potent patient movement
The patient group movement stands at an all-time high. Propelled forward by growing levels of patient dissatisfaction with cash-strapped healthcare systems, patient groups have multiplied in number, especially in countries (like the UK) strong in a tradition of philanthropy and civic activism. If anything, the tendency now is for groups to increase their specialisation. PatientView's database of patient groups counts 55 different types of cancer patient groups, for example, including organisations dedicated to the needs of people from ethnic minorities who have cancer, and groups that specialise in individual rare cancers.

As doctors' medical decisions come to be dictated along cost lines by the payers of healthcare, and with the public being called upon to assume ever-greater responsibility for their own healthcare, the patient – and the patient's opinions – have grown in importance. The fact is reflected in a new Europe-wide shift toward patient-centred healthcare. Patient advocacy groups have not been slow to recognise the change, positioning themselves as the recognised voice of the patient. For pharma, the question should not be whether or not it should expand associations with the patient movement, but, rather,  how best can expansion be achieved quickly, successfully and within the law?

The Author
Alex Wyke is CEO of PatientView
He can be contacted at or on +44 (0)1547 520 965.

To comment on this article, email

9th August 2010


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