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Open up to expert patients

Published on 28/01/05 at 04:13pm

The pharma industry has a crucial role to play in the successful roll-out of the Expert Patients Programme (EPP) and if it doesn't become more involved, the government's target of mainstreaming the programme throughout the NHS by 2007 stands no chance of being met.

That's the opinion of Patients Association president Claire Rayner, who recently addressed a top-level industry forum to discuss progress of the initiative, and to explore to what extent the industry should be embracing it.

Speaking to representatives of the UK's biggest pharma companies, and drawing on her own experiences as a patient, Rayner said there was clear evidence that self-management of chronic conditions held benefits for patients, as well as leading to improvements in concordance, something which should ring important bells for pharma companies.

Making the link between patient and industry benefit is something that pharma companies have not always been motivated to do (hence the reason why forum organisers The MSI Consultancy chose Rayner to address the meeting). From the patients' point of view, Rayner stressed that better patient compliance, and more informed patients choosing to continue with long-term treatment, without necessarily expecting to see 'acute' type immediate benefits, was good news for both groups.

Government or pharma industry initiative?

But how much should the industry be leading what is a government initiative? Why should the producers of medicines ensure the success of a programme which could in some cases lead to patients finding alternative ways of controlling their conditions, reducing their dependence on those very medicines?

The answer lies in examining why the EPP was launched in the first place and looking at the admittedly incomplete data available from the early pilots.

Launched in September 2001 with the publication of the report The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century, the programme has been piloted within the majority of PCTs in England. Essentially, it outlined the piloting of lay-led self-management programmes for patients with chronic diseases within the NHS in England, with those pilots vigorously evaluated prior to national roll-out of the initiative between now and 2007.

The challenge facing the EPP is the sheer scale of the undertaking: there are as many as 17.5 million adults living with a chronic illness in the UK. The initiative recognises that whilst there will be problems specific to the individual patient, there is a core of common needs, including:

  • Knowing how to recognise and act upon symptoms
  • Making the most effective use of medicines and treatments
  • Accessing social and other support services
  • Dealing with fatigue
  • Developing strategies to deal with the psychological consequences of the illness

These are all things that every pharma marketer should be embracing wholeheartedly.

Tapping into patient experience

The EPP aims to tap into the resource which is the knowledge and experience held by the patient - in some cases they understand their disease better than their physician. The objective being the patient is no longer a simple recipient of care, but a key decision-maker in the treatment process.

This is something which fits in neatly with the tenets of organisations like the Patients Association, but has worried the industry. If patients start to take decisions about their care, doesn't this dilute the ability of the industry to influence those decisions, traditionally taken by a relatively narrow band of identifiable and targetable healthcare professionals?

All the more so given that expert patient programmes are not just about educating or instructing patients about their condition with the aim of increasing patient compliance. They are based on what the original report described as "developing the confidence and motivation of patients to use their own skills and knowledge to take effective control over life with a chronic illness".

Pharma sticking its head in the sand?

But the effective and ongoing use of medicines has to be a key part of this, and what Rayner wants to see is a better link between the patient being in control and the industry enabling them to do so. And the industry being shut out, whether by the government or through sticking its own head in the sand, will have negative effects for everyone.

It is also wrong to assume that increased patient self-management is somehow freezing out the healthcare professional. In fact, research during the pilots has shown that it actually leads to an enhanced relationship between patient and doctor, with better communication and understanding on both sides.  

The 2001 report stated: 'It is important to recognise that an Expert Patient Programme is not an anti-professional initiative. It is based on partnership. The expertise of professionals is no less essential in treating chronic disease when patients are involved in self-management. The knowledge and skills achieved by such training programmes should serve to promote the most appropriate use of the available healthcare."

What role should pharma industry play?

All very laudable, but there is a key point missing. No mention of the industry role in the partnership - an omission noted at the forum by Rayner, and one which has led some industry planners to conclude that it has no part to play. Such thinking will ultimately let down patients, HCPs and the industry. Rayner's cynicism about the national roll-out being achieved by 2007 is indicative: the EPP is an opportunity for the industry, which should be embraced with both hands.

Despite anecdotal evidence that the pilots have been a success (accompanied by much trumpeting from DH civil servants), little effort has been made by government to involve the industry, an omission that seems staggering given the potential affect on PCT prescribing budgets upwards or downwards of any change in the way people with chronic diseases are managed.

It's all about concordance

Yet it seems that the industry is guilty of not engaging with its customer base as much as it could have done on this issue. It spends considerable time wringing its hands about how it can improve patient compliance, and latterly has started to consider the rather more useful concept of concordance yet few seem to have made the connection between this trend and the EPP: it's all about concordance!

Let's consider the accepted definition of concordance, and then compare it to the approach being promoted by the EPP. For concordance to be achieved, three things must happen:

  • Patients must be informed enough to have the knowledge to participate in their treatment as partners (rather than simply passive recipients)
  • Healthcare professionals must involve the patients as partners during consultations
  • Support must be given to patients in taking their medicines

This is fundamentally what the EPP initiative is about, and yet the industry, whilst claiming to be striving for the 'holy grail' of concordance, is not engaging with the very government initiative designed to deliver this and which, crucially, will educate and encourage HCPs to deliver it as well.

It is estimated that only around 50% of patients with chronic diseases take their medicines in therapeutically effective doses. Part of this is down to HCPs failing to educate the patient about the reasons for and benefits behind a particular course of medication. But a significant part is down to the 'health beliefs' held by the patient, based on their own experience, culture, personality and so on.  

Given that explicit patient consent is necessary if the medicine is to be taken correctly, ignoring these patient-held beliefs is folly and it is this which the EPP is seeking to overcome. It's bang on the industry's agenda. So why isn't it more involved?

Improve quality of information

Back at the forum, Rayner was keen to see the industry play its part. She maintained that one 'quick win' way to improve patients' knowledge is to improve the quality of information they receive, both about their condition and their medication, the latter via better patient information leaflets. These leaflets are often too narrow, too negative and too often contain a disproportionate amount of information about the pharma company rather than what the patient needs to know.  

Rayner suggested that patient organisations should be involved in the compilation of patient information leaflets right from the outset, to ensure that they are meeting the needs of the end-users. Again, better information for patients would result in an increased likelihood of them taking their medicines correctly, to the benefit of both patient and pharma companies.

The Patients Association is in a good position to comment on how patients behave. According to Rayner, they are largely still in awe of their doctor, and hence don't like to be a nuisance even if that means they refrain from describing their problems, and certainly from asking questions which would make them better informed. The EPP will help them to do this, but Rayner thinks that there is a role for the industry in patient education too.

The importance of the patient-doctor relationship, although still vital, is being eroded as other HCPs become involved in the management of chronic conditions. The latest group to see their role enhanced, and perhaps the one which is most vital to the industry, is pharmacists.

Pharmacists managing long term patient care

Pharmacists train for years, and probably know more about individual medicines than doctors, and this is reflected in the new contract, which explicitly stresses their importance in managing long-term patient care. Providing quality information at the 'point-of-sale (rather than exclusively at the point of prescription) will become a must-do, especially as pharmacists start to make treatment decisions in consultation with their customers/patients.

In fact, the sources of information about chronic conditions are varied and numerous, and if the industry is to get its message across, it must think outside the traditional channels and start to use some of the new ways of reaching patients who are taking on more responsibility for managing their own conditions, as well as GP surgeries, hospital clinics and other HCPs, pharmacies, patient action groups, the internet, the media, public libraries, and so on.

It's a long list and the information needs to be widely available, but also credible, reliable, understandable (to the layman) and accessible.

The EPP is at an interesting juncture, in the context of more information being available (although much of it unfiltered via the internet); patients seeing themselves more and more as consumers; and doctors struggling to come to terms with a new order where their opinion isn't always accepted without question.

If the pharma industry is to maximise its opportunities in the field of chronic illnesses, it must engage more in the process of change which the EPP represents.

That means embracing the principle of the expert patient, rather than feeling threatened by it; it means recognising that there is a clear correlation between patient benefit and its own interests; and most importantly playing a proactive role in ensuring that the government's target of a national roll-out by 2007 is achieved.

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