Communicating in the changing world of chronic disease management: insights from diabetes

Many hundreds of marketed pharmaceutical products target chronic diseases: anti-hypertensives, insulin, anti-depressants, anti-inflammatories, and inhaled steroids are just some examples. These drug treatments have become more and more sophisticated, sometimes targeting elements of disease processes that we were not even aware of 20 years ago. However, successful management of chronic diseases requires more than just good drug treatments; it requires effective and sustained patient self-management.

As a chronic disease, diabetes has a self-management regimen that “is one of the most challenging of any for chronic illness” (Schillinger et al., 2002). This is well illustrated using some simple calculations. If a patient with diabetes has a 30-minute appointment with her physician once a month, in any one year, that patient will spend 0.07% with her physician, and 99.93% of her time on her own. During this time, she may need to inject herself up to 1800 times, each time considering what she’s going to eat, how active she’s going to be, when her next meal might be etc. She should also be checking her blood glucose levels several times each day, to assess whether she made the right assumptions about her insulin dose and food intake, and subsequently, make any necessary adaptations to her insulin regimen. And that’s before she starts to think about looking after her feet, maintaining a healthy diet, taking sufficient exercise, and not getting too drunk on a Saturday night… When you think of it in this detail, it is hardly surprising that self-management is usually far from perfect – in the UK, data suggest that up to 50% of patients with chronic diseases fail to take their medication properly. In particular, 20% of type 2 diabetes patients do not take their medication at least once a week, and 80% do not test their blood glucose at least once a day, because they have not arranged sufficient testing strips (UK Department of Health, 2002).

With the increasing recognition of the importance of patient self-management, it is clear that effective marketing of chronic disease products demands strategies that embrace patient self-management. Davis et al. (2000) identified 3 elements to effective patient self-management: 1. patients must be well informed about their disease (and beyond this they must not just have the knowledge but also understand how to use it i.e., be able to adapt the knowledge for their purpose); 2. they must know where they can access treatment; 3. they must have greater control over their treatment. Similarly, a recent UK department of health publication stressed that the focus of healthcare for chronic conditions should be: to treat patients sooner, nearer to home and earlier in the course of disease (UK Department of Health, 2005). To do this requires: earlier detection; good control to minimize effects of disease and reduce complications; more effective medicine management; crises reduction; promotion of independence, and empowering patients to allow them to take control of their lives.

This last point is inherent to effective self-management. Patients need to be partners in their own care, ideally contributing to (or, rather, feeling empowered to be able to contribute to) decisions about their care. This, of course, does not mean that healthcare providers are redundant; far from it. Healthcare providers are experts in diseases and patients are experts in their own disease. Together (in partnership), these experts can work out the best course of care. What this means for the provider is that they need to understand the patient’s personal model. So, going back to diabetes, the provider needs to understand what the patient thinks about his diabetes, how using insulin fits into his lifestyle, what quality of life elements he especially values, how having diabetes makes him feel - angry? fearful? embarrassed? Emotions and cognitions can compromise care (Lawson et al., 2005), for example, patients who are angry with the care they are receiving (e.g., if it is too regimented or doctor-centered), or who are fed-up with perceived criticisms of their self-management ability, may fail to attend clinic appointments because they perceive them as pointless or depressing; fear (for example of insulin injections) can be a barrier to intensifying treatment; and denial of disease severity can result in low regimen adherence. Only by identifying and understanding the basis for emotions and cognitions, can personalized strategies and techniques be developed to address negative emotions, and thus self-management improved. Ultimately, care and care decisions should be tailored to each individual patient, with the patient actively involved at a level at which they are comfortable and capable.

In this patient-centered, individualized model of care, it is not just healthcare professionals who are making prescribing and management decisions. Thus, your marketing and communication materials also need to target the other key decision maker, the patient. A chronic disease product could be pharmacologically the best in the world, but if it is not geared for self-management, or marketed with self-management in mind, it will never achieve its clinical potential. Take insulin, for example, you could have the perfect insulin analog, with an ideal pharmacokinetic profile and a pharmacodynamic effect close to the real thing, but if diabetes patients don’t understand how to vary their dose according to what they eat, or they don’t like the delivery device, the insulin will never achieve its potential. Likewise, you may have a highly effective lipid-modifying therapy, with a troublesome side-effect that diminishes after the first few weeks of treatment. If the patient is not aware that these side-effects are transient, they are highly likely to discontinue treatment before they find out, especially if they have no overt signs of illness.

Patient-focused activities

There are a number of ways that you can target patients. The examples below are provided from our experience of diabetes and cardiovascular treatment.

Structured patient education programs

Sponsoring a structured patient education program is probably the most obvious way of encouraging patient access to information and skills central to their care. Of fundamental importance in these programs, however, is that they are impartial. Getting involved in these programs is not just about selling more of your product. Instead, it’s about aligning your marketing strategy with an increasingly recognized model of care; it’s about aligning patient healthcare needs and corporate goals. A good example of a structured education program is the DAFNE (dose adjustment for normal eating) program for type 1 diabetes patients. This program was initially developed in Germany, and similar programs have since been implemented in several other countries, including Australia and the UK. Patients enrolled in this program attend a 5-day course, during which they learn how to manage their insulin therapy, particularly how to match their insulin dose to their food intake at each meal. Studies have shown that DAFNE is effective in improving glycemic control, treatment satisfaction, dietary freedom and quality of life (DAFNE Study Group, 2002).

Adherence programs

These programs focus specifically on encouraging patients to adhere to medication regimens over sustained time periods. Take our earlier example of a medication that has an initial transient unwanted side-effect. An adherence program to tackle this issue may involve: educational backgrounders or an explanatory video explaining why it is important to take the medication and outlining the risk of side-effects; a take-home record card to allow patients to monitor the side-effects, so that they can see for themselves that the side-effect is diminishing over time; a healthcare professional management plan to treat the side-effect if possible; explanatory videos; and a schedule for a follow-up call or visit to investigate the status of the side-effect. With the continuing technological advances, text messaging and email may also be appropriate communication channels for delivering adherence programs

Patient websites

Websites are a tried and tested method of providing information to patients. The power of the Internet as a resource is striking, and the development of a good website containing appropriately detailed information on all aspects of a disease and its treatment, what to expect during the course of the condition, tips for self-management, and how to talk to the healthcare team etc. can be an exceptionally useful tool.

Healthcarer-focused activities

More and more healthcare professionals are appreciating the importance of moving away from a paternalistic style of care to a shared care partnership. Nevertheless, there is still plenty of scope for educating the healthcare team regarding the importance of this approach, and the best ways to implement and support patient-centered care.

Large-scale, global initiatives

A good example of a project to focus attention on the importance of self-management is the DAWN (Diabetes Attitudes Wishes and Needs) program (a Novo Nordisk initiative in collaboration with the International Diabetes Federation and an expert advisory board). This program grew out of the large scale, international DAWN study conducted in 2001 using telephone or face-to-face interviewing of more than 5000 diabetes patients and more than 3000 carers (primary care physicians, specialists and nurses) in 13 countries. This study examined the perceptions, attitudes, and needs of this sample, and their perceived barriers to improved care, and showed that there was significant room for improvement in patient care. It highlighted the need for an approach to diabetes care that looks beyond the medical targets, and considers the psychosocial needs of the person behind the disease. The subsequent and ongoing DAWN program is an initiative to facilitate concrete action and best practice sharing in patient-centered care on a global scale. The program supports international meetings, local groups, and the DAWN website. It has also produced a number of educational tools to promote patient-centered care. More information can be found at: www.dawnstudy.com.

Medical education programs

Continuing medical education (CME) is an important element of professional development for all healthcare providers, and an area that is well-established in the US. It recognizes that providers need to maintain, and develop knowledge, skills and professional performance to ensure high standards of patient care are sustained. CME traditionally focuses on the clinical topics; however, over the years, it has come to also incorporate managerial, social and personal skills (Peck et al., 2000). To reflect this shift, CME in the UK is now more commonly referred to as Continued Professional Development (CPD), with “relationships with patients” (communicating effectively with individuals or groups, acknowledging the rights of patients to be fully involved in care decisions) being a recommended area of learning (Guidance on Continued Professional Development, General Medical Council, 2004). While the emphasis on CME/CPD differs from country to country, many countries now require documented proof of continued learning (e.g., number of credits attained) as part of physician appraisal and revalidation processes (where applicable). Medical education is not just about earning credits however, it is a vital element of ensuring that information, knowledge and care remains current, accurate, and relevant.

Medical education can take many formats (see, e.g., AMA, 2006) including:

• Live activities – actual or virtual attendance at conferences, workshops, seminars etc.
• Enduring materials – involve printed, recorded, online or electronic activities for individual or group use; these need to involve user interaction or self-assessment.
• Journal-based CME – an article is identified, and the some form of learning activity/interaction planned around the article.

The conclusion?

The changing face of care means that chronic disease management will never again just be about pharmaceutical products. The future will be about combining the best, most appropriate products with the best, most appropriate self-management education and support programs within the context of patient-centered care. The concept of patient-centered care can be integrated into all of your activities from publication planning, meetings and symposia, to advertising campaigns and medical education activities. Embracing this self-management model is of fundamental importance in marketing products for chronic care, and ultimately in improving patient care.

References

American Medical Association. AMA Physician’s recognition award booklet 2006 revision.
http://www.ama-assn.org/ama1/pub/upload/mm/455/pra2006.pdf

DAFNE Study Group. Training in flexible, intensive insulin management to enable dietary freedom in people with type 1 diabetes: dose adjustment for normal eating (DAFNE) randomised controlled trial. BMJ 2002;325:746–51

Davis RM, Wagner EG, Groves T. Advances in managing chronic disease. BMJ 2000;320:525–6

General Medical Council. Guidance on Continuing professional development.
http://www.gmc-uk.org/education/pro_development/pro_
development_guidance.asp,
issued 2004

Lawson V, Lyne PA, Harvey JN, Bundy CE. Understanding why people with type 1 diabetes do not attend for specialist advice: a qualitative analysis of the views of people with insulin-dependent diabetes who do not attend diabetes clinic. J Health Psychol 2005;10:409–23

Peck C, McCall M, McLaren B, Rotem T. Continuing medical education and continuing professional development: international comparisons. BMJ 2000;320:432–5

Schillinger D, Grumbach K, Piette J, Wang F, Osmond D, Daher C, Palacios J, Sullivan GD, Bindman AB. Association of health literacy with diabetes outcomes. JAMA 2002;288:475–82

UK Department of Health. Supporting people with long-term conditions. http://www.dh.gov.uk/assetRoot/04/09/98/68/04099868.pdf,
issued 2005

UK Department of Health. Chronic disease management and self-care. National Service Frameworks. A practical aid to implementation in primary care.
http://www.dh.gov.uk/assetRoot/04/06/06/37/04060637.pdf,
issued 2002