The Consumer Age

pharmafile | October 21, 2003 | Feature | Medical Communications |  empowered, patients 

The growing influence of patient advocacy groups (PAGs) such as the Patients Association is evidence of patient power flexing its combined muscle. This trend has already been felt in the OTC world and now the pharmaceutical industry must react to it.

The growth of consumerism among patients

Mirroring the increase in consumer power across society, and encouraged by the language of the market creeping into healthcare, patients increasingly view themselves as customers. They are no longer willing to accept the opinions and advice of the healthcare profession unquestioningly – the idea that 'doctor knows best.' Instead patients are beginning to see themselves as equal partners in the doctor-patient relationship and, rather than passively accepting what is done to them, they now expect to play an active a role in decision-making.

According to Professor Angela Coulter, Chief Executive of the Picker Institute Europe, which promotes more patient-focused healthcare, urgent changes are needed in the way patients are cared for. "Doctors need to wake up – public attitudes are changing faster than they realise and this is leading to a gulf between what people want and the way in which healthcare is currently being delivered."

Alongside this, patients now feel that they can demand rights. The growth of bodies such as the Patients Association reflects patients' ever-more active participation in their care, and patient advocacy groups are becoming increasingly successful in shaping policy.

As Professor Coulter says: "The patient of the future wants to be more in control of their treatment, to be able to make an informed choice and, above all, to be listened to." A survey by Professor Coulter's institute involving more than 8,000 people across Europe identified patient empowerment as the top priority among respondents, with people in all the countries surveyed wanting a much greater say in their healthcare.

The role of the expert patient

Since the early 1990s the concept of the 'expert patient' has been seen as a significant step forward in the management of chronic diseases. Following the publication of the NHS white paper, which placed the patient at the centre of the NHS and set out a role for patients in local and regional healthcare decision-making through PCT boards, the government has recognised the value of encouraging patients to become better informed by launching the 'expert patient' initiative. This has become a centrepiece of the NHS approach to chronic disease management. The programme is currently being piloted in 100 PCTs in England prior to a roll out in 2004.

But, according to David Davenport-Firth, Creative Director at Sugar Consulting, if pharmaceutical companies spend as much time listening to their customers as consumer goods manufacturers do they would realise there is not a single type of expert patient. "If we can segment our patient population by values and beliefs, then we can then identify what makes patients within each segment 'expert' or rather what makes them adhere or comply with the directions for their medicine. By doing that, we can then learn from these 'expert' patients how to best intervene with 'non-expert' patients in the same segment, to enhance their adherence," he says.

Better informed patients

According to Dr Paul Stuart-Kregor, Director of The MSI Consultancy, a level of understanding about the disease and its treatment is central to the patients ability to make decisions regarding his or her care. In this respect, patients are now better informed than ever before. The explosion in Internet usage has meant that patients' are becoming better equipped with information about their condition, and about options for treatment. However, sometimes the information patients obtain can be of dubious quality and there is a clear need for high quality, balanced, accurate and up-to-date information.

Other than through patient information leaflets, legal restrictions have made it difficult for pharma companies to provide this kind of information to patients, making them reluctant to even try. Tony Davey, Managing Director of TCC Advertising, says that, although there is nothing to prevent pharma companies answering patients questions specifically relating to their medication, they are very very hesitant to do so. "I don't know of any medical department that is staffed and resourced to cope with any great number of patient enquiries."

Meanwhile, proposals to pilot pharma-consumer communications across Europe in the areas of HIV/AIDS, asthma and diabetes have been unequivocally blocked by MEPs. In June 2002 a Consumer Association Omnibus Survey revealed a considerable degree of scepticism among patients/consumers about the quality of information from the pharma industry: 81% of people surveyed believed that drug companies will spend most money on advertising the drugs that give them the most profit and only 25% felt that drug company advertising would provide unbiased and comprehensive information about treatments, including non-drug treatments and competing brands. In addition, 62% of people believed that drug company advertising would not give information about possible side effects and 59% believed that drug company advertising would try and convince people that they have illnesses that do not really have.

On the other hand, 60% of respondents felt that advertising prescription-only medicines would raise awareness of conditions people might not otherwise realise they had, and 53% of people believed that patients would seek treatment more quickly if they had seen an advertisement for a prescription-only medicine.

It is clear from these responses that the pharma industry must recognise and acknowledge the patient/consumer's doubts and fears regarding information. The industry has to provide balanced and credible information and cannot be seen to be selective about the information it makes available.

The 'pull' effect

In Dr Paul Stuart-Kregor's view, the fact that patients are now better informed has led to a 'pull' effect on GPs. With patients increasingly influencing prescribing – while at the same time some prescribing decisions being taken out of individual clinicians' hands with the growing influence of PCT prescribing committees and formularies  this creates a two-way pull on the GPs prescribing decisions and therefore has a significant impact on traditional, doctor-centred pharma marketing strategies.

The OTC dimension

The way OTC drugs are distributed – with supermarkets now muscling in on both P and OTC markets  is changing patient/consumer attitudes to purchasing decisions. With less advice available at the outlet, traditional low-key marketing support is increasingly being displaced by more aggressive marketing activities of the kind more usually seen for fast-moving consumer goods (FMCG). Clearly, pharma companies must learn from big-brand FMCG campaigns to maximise sales in this increasingly 'commercial', consumerist environment.

According to Tony Davey, brand loyalty for pharma inevitably starts with the prescriber – otherwise drugs won't even reach patients to begin with. "But medicines in general, whether OTC or POM, have to be perceived to work – we're not talking about fags or booze here. In the eyes of a patient a medicine either works or it doesn't, and if it does then it will start to generate loyalty," he says.

The prescription dimension

How is all of this impacting on prescription drugs, where in theory consumers do not have the purchasing decision, and the clinical choice is with the clinician? As we have already established, this decision is increasingly being influenced by other factors, including the patients themselves and doctors need help to halt the erosion of their prescribing powers. So how can pharma companies tackle this loss of control by doctors  their traditional target market? How can they influence the patient/consumer 'pull' while staying the right side of regulatory control?

Patients as consumers

In order for pharma companies to succeed in this altered environment, they have to ensure that the patient is ready to take on the empowered role. According to Dr Paul Stuart-Kregor, appreciating the stages involved in changing patients' health behaviour helps to understand how the pharma industry can connect with patients. Those patients already taking a more active part in their healthcare need only to be pointed to the right source of information. Those patients 'in preparation' and thus interested in participating more actively in their healthcare but needing a 'push' before they jump, need to be persuaded of the consequences for their health if they do not take an active part in the process.

Research shows that if patients have this information they will enter into dialogue with their doctor about their condition and the various treatment options available and will ultimately select an appropriate evidence-based treatment. Obviously it may not be possible to identify/target individual patients with this information but particular groups have common needs and messages can be tailored to suit these.

The tools to achieve this start with creating awareness – 'preparation'. This should involve a messaging campaign highlighting treatment best practice and the risks and benefits of treatment. Campaigns can cover prevention and risk awareness, such as blood pressure and cholesterol in the area of heart disease. The next stage is to connect – 'take action'. PR activity might involve a corporate website, calling on national intermediaries, for example disease champions, and involving special interest groups. Once this stage has been accomplished, ongoing support must be provided – 'maintenance'. This can be achieved via general health websites, consumer medical resources and patient advocacy groups (PAGs).

PAGs

There are three basic types of PAG; those run by patients, which most UK PAGs are; those run by doctors, usually found in Italy and Spain or southern Europe although Diabetes UK is a UK example; and those run jointly by doctors and patient advocates, such as UK National Osteoporosis Society. PAGs pursue their mission through accumulating information about diseases, conditions and their treatment, grouping at regional or international level, and ultimately shaping of healthcare policy.

As we have seen, DTC advertising of prescription drugs is currently not allowed so pharma companies seek to inform patients via other means. Supporting PAGs is seen as a credible way of achieving this. Naturally, PAGs have certain expectations of pharma companies. They look to the industry to facilitate the distribution of timely, reliable and accurate information that will help patients. At the same time, they also want support from the industry for the group's advocacy efforts, while recognising and respecting the role of the PAG and the importance of their particular agenda, thereby helping the PAG to maintain its only real capital, namely its integrity, credibility and independence. One example of a strong Industry/PAG working relationship is that which exists between Ferring Pharmaceuticals Ltd and the Turner Syndrome Support Society.

Ruth Kimbell from Ferring said: "It is well recognised that to achieve optimal outcomes for children on growth hormone therapy, concordance with their long term daily therapy is essential. Some of the key factors affecting concordance are managing patient and parent expectations and helping them to understand the condition being treated. By working closely with the Turner Syndrome Support Society (TSSS), last year Ferring pharmaceuticals and the TSSS were able to produce a booklet for families of Turner Syndrome children, that has given access to the most up to date information on this relatively unknown condition, whilst allowing Ferring to build a strong positive working relationship with a key patient organisation."

In forging relationships with PAGs, pharma companies are seeking to expand their markets and get their products used first-line, as well as lobbying against restrictive government policies and regulations. Linking up with a PAG means that the company is seen as a caring and socially responsible business. However, as pointed out by Andrew Herxheimer recently in the British Medical Journal, like any commercial enterprise, the drug company must focus on making a profit and expanding their markets. With new drugs this has to happen fast because research is expensive and development costs have to be recovered quickly before competitor products arrive on the market.

But there are many benefits pharma in collaborating with a PAG; effective dissemination of messages, building patient awareness (and also increasing patient numbers and ensuring compliance), counterbalancing unregulated information from the Internet, strengthening corporate image, obtaining information from patients and influencing government decisions.

For a pharma company, choosing the right PAG will help deliver messages through a more patient/consumer oriented approach – every contact with the consumer should deliver information that helps to build core brand values. Obviously the way the messages are delivered depends on the nature of the brand.

Depending on core brand values, certain brands may require a 'scientific' approach via a scientific-led PAG. The very effective working relationship between the TSSS and Ferring Pharmaceuticals, for example, allows very complex scientific messages about the role of growth hormone therapy in Turner syndrome to be delivered in an understandable and user-friendly way, not only to patients but also to all those involved in their care. This has enormous benefits for all those involved – the TSSS, patients, their carers, healthcare professionals and the company.

Arlene Smyth, Executive Officer from the TSSS, clarified this issue: "Patients have very high expectations of medical professionals, who cannot possibly know about every condition in detail, especially rare and complicated conditions such as Turner Syndrome (TS). One of the key aims of the TSSS is to provide accurate, up-to-date information for those who have TS, their families and healthcare professionals involved in the care of patients. This aim has been achieved by working with Ferring. The TSSS were able to share the knowledge and understanding only patients living with the condition have.

"Ferring were able to provide the support to produce the excellent publication 'Turner Syndrome: lifelong guidance and support'. The information provided in this book has been praised by patients, carers, teachers and many healthcare professionals involved in the care of those who have TS. The end result is better-informed patients who understand their treatment and are more compliant with their treatment. The success of this project is a good example of how PAGs and pharma can work together for the greater good of many."

Although there can be many areas of shared interest in any collaboration between a PAG and a pharma company, clearly there are and will always be tensions between the two parties – not least, according to Andrew Herxheimer, because one partner is usually rich and the other poor.

Ideally, pharma companies should not threaten or undermine the PAG's capital, namely its independence and respected position. The relationship needs to go beyond increasing sales and pharma companies need to take a more flexible approach and be seen to support the PAG's advocacy efforts. Above all, the industry needs to acknowledge and understand the different agendas involved and ultimately to seek areas of mutual benefit.

The way forward

There is clearly more that the industry can do here. Tony Davey says it is up to pharma companies to take the initiative: "They need to make sure they're in the lead in providing patients with information. Apart from anything else this would ensure that the patient gets accurate and hopefully practical and helpful information and it goes a long way to managing expectations."

Indeed, working more closely with patients can open up a wealth of possibilities to those companies willing to try. David Davenport-Firth suggests the industry look at what happens after patients have visited their doctor: "Let's stop focusing solely on the prescription and let's work out how to offer an 'after-sales service' that's as good as those of the best consumer goods manufacturers. Who knows, our patients may become more adherent."

The role of pharma companies in influencing the information that patients obtain is undervalued and needs developing now. In this age of ever increasing consumer power, Dr Paul Stuart-Kregor stresses that the industry cannot simply hope that increased consumerism amongst patients will just go away – it won't. However, if efforts are made to understand the patient-as-consumer, patient empowerment can be used to influence the decisions made by the clinician. While OTC companies can learn much from the FMCG world in this regard, with the arguments surrounding the introduction of DTC advertising of prescription medicines still ongoing, one of the most effective ways of getting that information to patients is to develop effective relationships with PAGs.

As the future unfolds, both the medical profession and the pharmaceutical industry have to accept that ultimately, it is the patient who is the end-consumer of their services and products.

Helen Lawn is Director of Helen Lawn Associates Ltd and PR Officer for the PM Society.