Are patients about to take charge?

pharmafile | December 18, 2006 | Feature | Medical Communications, Sales and Marketing |  NHS, healthcare, information, patients 

While debate rages about many aspects of the pharmaceutical industry, one thing is agreed: our world is becoming ever-more patient-centred. Decisions about how and where treatment is offered, resource allocation and which medicines can be prescribed are all being taken with the patient at the forefront  and quite rightly, too.

What this means is an inexorable growth in 'patient power', with the end-users of healthcare taking an ever greater role in their own care and treatment. A crucial part of making this work is to help patients become better informed, so they can make choices sensibly. And yet despite this, all sorts of barriers are being put in the way of communications between the patients and one of their key partners in healthcare: the industry, which develops and supplies those medicines they need to stay healthy. The government might decide how the money is to be spent, but it's the consumer's cash it is spending.

Alongside this is the explosion in sources of information available to patients, particularly on the internet, but how many patients bother to check the factual accuracy of what they read, or would be able to do so? Isn't it better that they get good quality information, in a well-regulated way, from the actual source of their treatments?

Dr Paul Stuart-Kregor, of specialists in healthcare, the MSI Consultancy, certainly thinks so. "We have to try to address the pre-conceived perceptions about why and how the industry wants to communicate with patients," he says.

"A better-informed patient will use their medicines better. That leads to a win-win situation, because the patient will enjoy better health, and the NHS will avoid the waste and extra cost that lack of compliance implies, including more serious, more costly treatments further down the line. And yes, there is a benefit for the industry as well.

"Because this benefit is there, we are often accused of 'disease-mongering', particularly in the so-called lifestyle therapy areas. But that is simply not true, and when it comes to serious, life-threatening and quality-of-life-threatening diseases, such as diabetes, lack of patient knowledge is leading to serious problems. The patient has to be better informed, and it's nonsense to suggest that the industry has no part to play in this process."

Taking the initiative

No-one can deny that the industry is trying to address this issue. Initiatives such as Ask About Medicines Week and the ABPI's Involved Patient Initiative do exist, but they are still at a relatively early stage. And isn't any patient communication programme always going to be hamstrung by regulatory constraints, anyway?

"Certainly not," says Tony Davey, Strategic Director at the Treatment Support Partnership. "In none of the disease awareness, treatment awareness or patient support initiatives that we have created have the regulations been a barrier to communication with patients, nor have they compromised the results we were aiming for."

Di Stafford of patient communications specialist The Patient Practice agrees, but qualifies that by saying that setting realistic objectives in the context of legal and regulatory constraints is vital. So, raising awareness of a particular condition or disease is acceptable; while raising awareness of a particular medicine would be less realistic, as it could be deemed to be promotional, something long outlawed by successive ABPI Codes, as well as legislation.

"I think what is undoubtedly true is that the industry's contribution to patient communications will probably always form just one part of the 'jigsaw' of information that a patient will receive," says Stafford.  "Nevertheless, this should be considered an important and valuable part. After all, surely the manufacturer of a medicine knows the most about it, and should be able to share some of this valuable knowledge?"

Although DTC promotion is not permitted – and not likely to be in the foreseeable future – more targeted patient communications are put to good effect. Tactics such as disease-awareness campaigns, patient-support programmes and so on, have all been used as legitimate ways of communicating with patients within the constraints of the regulatory environment.

Patients need knowledge

But how effective have they been? Have they increased patient knowledge and won patient loyalty, or have they simply engendered patient cynicism, summed up in that media-friendly phrase regularly used as a stick to beat the industry: 'disease-mongering'?

"I've been involved in the development of all kinds of patient campaigns and programmes over the last eight years, and in my experience, patients have always welcomed well-planned and designed patient information and support programmes from industry, and/or other groups," argues Di Stafford. "The fact is that patients frequently say they lack good quality information, and sadly, patient information departments within the NHS have suffered from continued funding cuts over recent years."

Tony Davey agrees. "The simple truth is that patients are hungry for information, about diseases and their treatment; information that they can understand and act upon. We know from our survey results that disease/treatment awareness initiatives and treatment support programmes alike are hugely popular with patients and very effective, both for the welfare of patients and for the interests of the sponsoring company.

"In our experience, patient loyalty with treatment support programmes is high, essentially because they deliver information about the treatment and other help that patients value. We have never yet encountered any serious negative or cynical reactions from patients in the context of either disease and treatment awareness, or treatment support programmes."

Compliance and loyalty

Two of the main techniques which have been adopted by the industry as they try to balance effectiveness with staying the right side of the regulatory line are Disease Awareness Campaigns (DACs) and Patient Communities and Support Programmes. While the latter are less controversial, it is the use of DACs which has led to the accusation of disease-mongering.

However, when used properly, DACs, especially when run in conjunction with credible Patient Advocacy Groups, can grow a patient population, not by drawing in people who don't need treatment, but by educating those who do to recognise the fact.  

Naturally, this can lead to increased drug demand on the NHS  but surely that's better than letting these patients wait until their condition becomes much more serious, perhaps requiring expensive hospital treatment? And that's just the accountant's viewpoint. What about the harm done to the quality of life of those who live in ignorance of the treatments available for their condition – or even of the condition itself?

Patient Community Programmes have attracted a lower level of media cynicism, perhaps because they tend to operate less in the public domain, being targeted specifically at patients already receiving treatment.

This technique is doing what Paul Stuart-Kregor called "using their medicines better".  They can be highly effective in helping a patient to get the most out of their medicine, to solve any early problems in the treatment regime, and to encourage compliance and persistency.

Equally important is the emotional support that such programmes can provide, something which, if done well, can engender a significant amount of patient loyalty to the pharma company and its medicine.

If these two tried-and-tested techniques can work well even within a strict regulatory framework, what about the newer initiatives such as Ask About Medicines – actually a not-for-profit, independent company, with a clear sponsorship policy  and the ABPI's Involved Patient Initiative?

Informed patients

The jury is still out here, even with those who have been closely involved being aware that more needs to be done.

"Despite being regarded as increasingly important, patient communications objectives still seem somewhat confused and fragmented, and the IPI needs even more senior level commitment," says Di Stafford, who is a member of the AAM Advisory Group, and until leaving Pfizer earlier this year, was also a member of the IPI.

Despite this, she still thinks the new initiatives are moving in the right direction.  "Personally, I think AAM is an excellent initiative, and what it has managed to create is a campaign banner under which a broad range of groups, companies, organisations and public bodies have been able to unite.

"However, as with many organisations of this kind, it suffers from lack of resources, and therefore is limited in the scope and size of its campaigns. I would, therefore, encourage pharma companies to consider and discuss joint campaigns with the AAM team.

"The Involved Patient Initiative (IPI) has developed some useful campaigns with AAM in recent years  most notably the Cancer Information Maze Report, and the Diabetes Jigsaw Report."

Regulation is not a barrier

What about the pitfalls? Is the industry reluctant to go too far down the patient communication route because it fears that it might all go horribly wrong? In practice, the main two are easily avoided. Regulation is the obvious area where companies can fall foul, but this is simply a matter of understanding the rules and abiding by them.

Perhaps more serious is the potential to get in the way of the patient/doctor relationship.  Some GPs may bemoan more patients turning up as a result of initiatives, and a very small minority might even resent facing informed patients, but these are swimming against the tide, and are forming an increasingly small minority. Most doctors would rather patients presented with conditions, and used their medication correctly, so that the health of their communities improved.

Despite all the initiatives, and the apparent lack of problems, the industry is still not doing everything it could do to maximise patient communications, according to Tony Davey.  But apart from the obvious – communicate more with patients – what specific steps should the industry be taking to be more effective, without falling foul of the regulations?

"In my view, the answer lies in something much more fundamental; that is, and again cases vary, that the industry doesn't regard patients as customers, in the true sense," asserts Davey. "And yet patients treat their medicines just like any other consumable product, making their own decisions about how and when to use them, or whether to use them at all.

"Clearly, this lack of recognition has its roots in the cultural history of the industry and it's high time for a cultural shift. So my answer is: adopt patients as customers for all they're worth and treat them accordingly.

"Let me put it like this; can you think of any other industry marketing premium quality products that communicates so little with its consumers?  Or is so reticent about helping the customer to get the most from using their products? Or has a bigger incentive to do otherwise (the annual estimated loss to the industry from poor compliance is around £3bn)? Falling foul of the regulations shouldn't be an issue – they are simply not a barrier, if you know what you're doing."

Di Stafford agrees, and immediately cites five areas where the industry could be doing more: patient information leaflets; Patient Information Areas on corporate websites (which companies are much freer to do since the 2006 Code); using company medical affairs patient response services; working with PAGs to develop joint patient information materials; and embracing all the opportunities that the online environment has to offer.

Everyone's a winner

What is clear is that the cynicism that is sometimes demonstrated is sourced in a lack of understanding about the benefit to patients – and by implication the NHS – inherent in well-run patient communications programmes.

Paul Stuart-Kregor believes that the industry has, on occasion, shot itself in the foot in this regard. "Pharma has not always helped itself, with too much emphasis on individual brands. While pharma is an industry, and therefore, there must be a commercial payback to everything that it does, that doesn't mean that it should always be overtly commercial.

"We must think in a longer-term way: if we can grow the cake, then everyone will get a bigger slice. And the way to grow that cake is by being part of the process that enables patients to manage their diseases better."

Tony Davey believes that the benefits are easy to see, and rewarding in every sense.  

He says: "Disease and treatment awareness programmes motivate people to seek help and advice from healthcare professionals for symptoms they have simply been tolerating, for conditions they didn't know they had, or for conditions they thought untreatable.

"And seek help they do in very large numbers. This means that more people get treatments they need and earlier than would otherwise have happened, if at all.  

Treatment support programmes help patients to use their medicines correctly in a variety of ways; for example, by explaining simply what the condition is, what the medicine does and the importance of using it properly, by providing advice and aids on self-administration techniques where, say, eye drops or inhalers, are involved, by providing memory aids for dose timing and by providing self-help advice and support.

"All this is designed and delivered to enlighten and motivate patients, so that more of them use their medication properly and get the full benefit rather than suffering more than they should for want of understanding."

Already, there are some excellent patient communications programmes in operation, and as Davey points out, they are having real benefits, not only for the pharma companies running them, but also for the patients they are targeting, and the HCPs who are trying to keep them healthy.

It's incumbent on everyone involved to get out there and shout about the successes of these programmes, using real data and evidence to show that they do work. If the industry sits back and keeps such good news to itself, then it shouldn't be surprised if both stricter regulation and media cynicism rear their ugly heads. Perhaps there is one more communications job to add to the list.

Andy Newman is a freelance medical journalist. He can be contacted at: andy@newmanassociates.co.uk