Healthy Skepticism Library item: 19737

Warning: This library includes all items relevant to health product marketing that we are aware of regardless of quality. Often we do not agree with all or part of the contents.

Publication type: Magazine

Willis J
You and patients can pull together
Pharmaceutical Marketing 1997 July 26

Abstract:

Just how close can drug companies get to patient groups and yet remain ethical?

Full text:

How far should patients be involved in pharmaceutical companies’ marketing strategies? Does the involvement of patients really benefit both sides? Or is this just a cynical bypassing of the restrictions on direct advertising of prescription medicines?
The Association of the British Pharmaceutical Industry hotly denies the last charge.
For the past few years, it has been firmly committed to building links with patient groups and “Putting patients first” was its Agenda for Health message last year.
To date, the main focus has been on improving patient information about medicines. Better informed patients help the industry as a whole on two levels, says Trevor Jones, the ABPI’s director-general.
First, he says, if patients know more about their medication they are more likely to comply with treatment, so drugs will be used more effectively. Second, in a climate of rationing, patients have the right to know the issues involved, so they can argue their case.
It is this concept of facilitating patients’ group so they can develop the skills and the voice to influence healthcare policies that has led to the setting up of an international forum bringing together all interested parties.
The Pharmaceutical Partners for Better Healthcare is a think tank supported by 35 research-based companies in the industry.
Executive director Nancy Mattison said, “The industry needs new products and patients need new drugs not only to survive in some cases, but to improve quality of life,”
All over the world, patients are facing the same problem; they may be denied access to effective, new therapies because healthcare systems are being forced to contain costs,
The Pharmaceutical Partners help provide an environment where groups can network with each other as well as meet healthcare opinion leaders and policy makers.
A broad base of patient support is of value to companies, particularly in areas such as biotechnology and therapeutic areas which affect relatively small groups of individuals.
“Patients groups are more active on a European level in supporting companies developing drugs for orphan diseases,” Ms Mattison explains.
On a national, regional and local level there are practical benefits for pharmaceutical companies too. Alan Sheppard, the marketing director for Evans Medical, says working with patients’ groups “actually enables us to identify customer needs by getting close to the end user and the level of support they require.”
In terms of marketing the patients’ groups help companies “rapidly disseminate information about a product to patients.” He added the caveat, “We have to follow the code of practice and provide information without making claims.”
But companies have to be willing to work patient groups on a broader scale within a therapeutic area rather than looking for product-focused projects, he says.
On the whole, patients’ groups appreciate the help from pharmaceutical companies and “they are now more aware that research is done by companies not the NHS.”
He recognises that there are many different types of patients’ groups, some are primarily fund-raising while others “are very politically driven, which can be a benefit or can be detrimental.”
Companies need to look at the groups within their therapeutic areas and do some research first before they make or accept overtures to build a relationship, just like they would with any business partnership.
Although there is now less suspicion of companies’ motives, some groups do have a policy not to work with individual companies.

Small groups
Sometimes there are good practical reasons why small groups may not seem to leap at the chance of working with companies.
Marilyn McCallum administers the National Association for the Relief of Paget’s Disease, which has about 2,500 members. Companies have approached the association, she says, but many do not appreciate the difficulties that a charity run by two part-timers has.
“We have no time to take up offers,” she says, as they are too busy dealing with the day-to-day running to have time to consider participating in research projects that will need to be monitored and evaluated.
At the other end of the spectrum are large national groups which do work closely with companies, but because they function in highly competitive therapeutic areas they have to balance and consider offers from several companies.

Maintain independence
It is this issue of maintaining independence that is of concern for many people and it is a fine line that companies and groups tread when they work together.
Partnerships must be a “mutual thing” says Hilary Kent, the director of information and training at the British Epilepsy Association. Either side should feel to put forward proposals to the other, but a “refusal to participate shouldn’t offend”, she says.
People with epilepsy need the research that the few companies who specialise in this area are carrying out, and the BEA can help these companies by helping them gather information, for example about the side-effects of the medication and the social effects of having the condition.
Such work can go some way to resolving the question “Do patients want to be seizure-free or side-effect-free?” she says.
Other areas that have been of mutual benefit are developing patient information leaflets, packaging and methods of delivery.

Product launch
David Wright,the general manager of the International Glaucoma Association, is not adverse to the idea of helping specifically with the launch of a new product, for example ensuring that eye drops are packaged so that they are easier to instil.
But he finds that the companies that take a longer time term view of working with patient groups generally develop more beneficial relationships as “We know what they want and they know what we want. It’s more of a symbiotic relationship.”
He acknowledges that support from pharmaceutical companies has helped the IGA to grow from a relatively small organisation, which was not able “to push things along” to a group representing over 13,500 members which has been able to utilise support from the industry to initiate national awareness campaigns, set up an Internet website and produce patient literature.
“We never endorse a product,” he says, “and nobody’s tried to influence us at all.” In return, the IGA has helped train company representatives about the effects of glaucoma on people’s lives and has spoken at medical meetings and drug launches.
Perhaps it is at drug launches that the input of patient groups is most apparent. These days patients’ representatives invariably are present and give a short presentation about their perspective.
But are patients’ representatives an essential component of a successful launch? While Jenny Hope from the Daily Mail concedes that it can be useful to have a patient there as “it can save legwork later if a story takes off,” she stresses that it is the clinical evidence of a drug’s effectiveness in the long term that is important.
Patients who have tried new drugs as part of a clinical trial are taking the drug in “unrealistic circumstances.”
Celia Hall, from the Daily Telegraph is more suspicious: “I have the absolute view that the pharmaceutical industry is not allowed to advertise to the public, and I am not going to allow them to do it through the backdoor via me.”
And doctors too are concerned about the industry straying into dubious areas. Peter Fellows, who is a GP and chair of the BMA’s prescribing committee is worried about “advertising techniques that target patients directly.”
He was particularly alarmed at suggestions that the UK could go down the same route as the US and allow advertising of prescription medicines to patients. “It’s hard enough for doctors to sift through all the information,” he says. I don’t have times to sit down with patients and explain why they can’t have a glossily advertised drug.”
Giving patients too much information can also be a problem, he believes. For example, ha has already had patients who have come back to his surgery saying they have decided not to take a medication he has prescribed because they are alarmed about the side-effects specified in patient information packs following European Union guidelines.
Karen Westaway, until recently franchise manager with Searle, also does not want to go down the route of direct advertising to patients as such campaigns would be unable to target the information given.
She said, “It is vital to inform patients, but at the level of detail they require. Motivated patients have loads of places where they can get information, they only have to log on to the Internet. We must help them to access the information they want.”
The role of the GPs, nurses and the primary healthcare team in providing patient information must not be overlooked and this is also an area in which companies can help, she adds.
It is also an area that pharmaceutical companies neglect at their peril; if they pursue patients groups to the detriment of their relationship with prescribers. Doctors must always know what’s going on first, says Mr Sheppard, so that they are not “embarrassed” by patients turning up in their surgeries armed with information the doctor has not been told about.