Nonadherence to prescribed medication: an orphan killer epidemic

  • Nonadherence to medication is a vast and rapidly growing killer epidemic
  • The epidemic is under reported, under-treated and costs healthcare systems billions
  • No healthcare stakeholder has assumed responsibility for reducing the burden of nonadherence and so it has become an orphan issue
  • Psychological techniques used by policy makers have been shown to change peoples’ behaviours, improve healthcare and reduce costs
  • The proliferation of smartphones embedded with behavioural techniques designed to coax people to adhere to medications holds promise
  • But recent research suggests that thousands of apps devised to reduce nonadherence use behavioural techniques sub-optimally
  • There is an opportunity to significantly improve nonadherence to medication by optimally utilising behavioural techniques and digital technology
  • The challenge needs to be embraced by all healthcare stakeholders
Nonadherence to prescribed medication: an orphan killer epidemic
Nonadherence to prescribed medication for patients with chronic long-term conditions (LTCs) is an out-of-control epidemic, which is undetected and undertreated. It kills hundreds of thousands, erodes the life chances of millions, costs billions and is one of the biggest obstacles to effective healthcare in the 21st century. According to the World Health Organization (WHO), “increasing the effectiveness of adherence interventions may have far greater impact on the health of the population than any improvement in specific medical treatments”.
There are a number of reasons why people with LTCs stop taking their medication, which include: (i) fear of potential side-effects, (ii) lack of understanding because taking a medication every day to reduce the risk of something bad happening can be confusing, (iii) failure to see immediate improvement, (iv) too many medications that often cannot be taken at the same time, (v) patients who are depressed are less likely to take their medications as prescribed, (vi) concerns about becoming dependent on a medicine and (vii) high drug costs, particularly in the US.
No healthcare stakeholder - patients, doctors, carers, regulators, pharmacists, pharmaceutical companies and healthcare providers – has made nonadherence a priority, so it has become an orphan issue. We suggest that all health stakeholders have a role to play in nonadherence and would benefit  by employing psychological techniques designed to encourage people to change their behaviour. 
In this Commentary

Because nonadherence to medication has a significant prevalence in people living with LTCs, we begin this Commentary by describing the vast and rapid growth of LTCs and their associated eyewatering costs. The management of LTCs rests with primary care doctors, but the average doctor-patient consultation is just a few minutes and more importantly, the majority of patients do not remember most of the information provided in such consultations. Not only do primary care doctors have little time to prescribe and explain medication regimes, there is little incentive for them to address nonadherence. We raise the question of whether doctors might be part of the problem by  citing a seminal paper published in The Lancet in 1974, which suggests that doctors have a propensity to medicalise healthcare and over-prescribe medicines. This can transform reasonably healthy people into habitual patients. We then describe a trend gaining momentum both in the US and the UK, whereby community-based pharmacists are becoming a healthcare destination and are well positioned to play a significant role in denting the nonadherence epidemic.  We draw passing reference to pharmaceutical companies’ interest in reducing nonadherence. We conclude by describing a number of research studies, which examine the confluence of mobile telephony and advances in behavioural science, which facilitate the increased use of apps embedded with behavioural techniques to address nonadherence to prescribed medication. Despite the large and growing use of such apps, studies suggest that the use of behavioural techniques in mobile applications to address nonadherence is sub-optimal. Thus, there remains an  opportunity for using advances in behavioural theory and practice to promote sustained and significant lifestyle behaviour changes designed  to reduce the nonadherence to prescribed medication epidemic.
Impact of LTCs in the US and UK
LTCs, e.g. diabetes, chronic obstructive pulmonary disease (COPD), arthritis and hypertension, are diseases for which there is currently no cure and they are managed with drugs and other treatments. Each year in the US, LTCs affect about 133m people and this is projected to rise to 157m by 2025. According to a 2012  study published in the Annals of Internal Medicine, people who take prescription medicines for LTCs typically only take about half of the prescribed doses. The study’s findings were updated to estimate costs in US dollars to reflect inflation for 2016 prices and published in the March 2018 edition of theAnnals of Pharmacotherapy. The authors estimated that the, “annual cost of drug-related morbidity and mortality resulting from nonoptimized medication therapy was US$528.4bn, equivalent to 16% of total US healthcare expenditures in 2016”.  This compared to 8% and 13% in 1995 and 2008, respectively. Although this estimate accounts for overall price inflation, it does not include non-medical or indirect costs, such as lost productivity or caregiver expenses, which have been estimated to be more than the direct medical costs for many LTCs. Also, the authors estimated that nonadherence results in about 275,689 deaths each year. 

In the UK nonadherence to prescribed medication among people with LTCs has a similar impact. According to a 2014 UK House of Common’s Health Committee report, “Effectively managing LTCs is widely recognised to be one of the greatest challenges facing the 21st-century”.  Seventy percent of total expenditure on healthcare in England is associated with the treatment of the 30% of the population with one LTC or more, and the number of people in England with one or more such condition - currently 15m - is projected to increase to around 18m by 2025. Care for LTCs presently accounts for 55% of primary care doctors’ appointments, 68% of outpatient and A&E appointments and 77% of inpatient bed days. The cost to NHS England of people with LTCs not taking their prescribed medicines appropriately and thereby not getting the full benefits to their health is estimated at more than £500m (US$635) a year, with a further cost of £300m (US$381) on wasted medication.

Nonadherence is not a doctor’s problem

Despite the fact that a medical consultation is a complex and multidimensional process, which is pivotal to the health of patients, the average time spent for each consultation is short and there is little or no time for doctors to educate or motivate patients. A 2017 paper published in the British Medical Journal (BMJ) reviewed 28.6m doctor-patient consultations across 67 countries and found that, in 18 countries, which represented about 50% of the global population, on average a doctor-patient consultation is five minutes or less. On average, British patients spend just over nine minutes with their primary care doctor  during an appointment and in the US, it is  17 minutes. More significantly, a 2016 study published in Health Expectations, suggested that patients only remember about a fifth of the information discussed in a standard doctor-patient consultation.


In addition to time constraints there is little incentive for doctors to address nonadherence. In the US, fee-for-service medicine incentivizes services, not improved outcomes. Although this is changing as insurers pay for value rather than activity, pay-for-quality programmes tend to be too small to motivate busy doctors. Similarly, the UK’s public healthcare system, which is free at the point of care for all citizens, lacks incentives for health professionals to be overly concerned about nonadherence to medication. Primary care doctors view their primary responsibility as making an accurate diagnosis followed by an appropriate prescription and generally tend to be unaware of the magnitude of nonadherence to medication.
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The medicalization of health

Compounding the problem of nonadherence is the medicalization of healthcare, which can transform healthy people into patients. This was graphically described by Ivan Illich, in a seminal paper entitled “Medical Nemesis” published in 1974 in The LancetThe same year, Illich published a book with the same title, which opens with the sentence, “The medical establishment has become a major threat to health”. Illich continued, “The disabling impact of professional control over medicine has reached the proportions of an epidemic”, which Illich referred to as an iatrogenic  epidemic:  derived from the Greek word “iatrogenesis” (ιατρογένεση), which means “originating from a physician or treatment”.
Healthy people transformed into patients

In a similar vein, a paper entitled “Let’s not turn elderly people into patients” and published in the May 2009 edition of the  British Medical Journal, suggested that annual health checks, which primary care doctors are incentivized to carry out, can transform reasonably healthy older people into habitual patients. The author, Michael Oliver, Professor Emeritus of Cardiology at the University of Edinburgh, suggested  that doctors view people over 70 to be at risk of one or other LTC and insist on medical checks. These  can lead to reasonably healthy individuals being told that they have high cholesterol levels or hypertension etc. and prescribed regular medications, instead of being encouraged, in the first instance, to exercise more and adopt healthier diets and lifestyles. Thus, a number of elderly people who considered themselves healthy on the way to the doctors, return home as patients. “What kind of medicine is this?” asks Oliver rhetorically, and answers, “It is politics taking preference over professionalism, obsession with government targets superseding common sense, paternalism replacing personal advice. It seems that many Western governments regard all people aged over 75 as patients”. And such perceptions can lead to over testing, over diagnoses and over treatment.
Pharmacists becoming significant healthcare destinations

Over the past decade pharmacists and pharmacies have been increasingly viewed as underutilised assets well positioned to improve nonadherence. In both the US and UK retail community pharmacies are accessible on a walk-in basis, without the need for an appointment. Pharmacists are the last checkpoint before a patient takes their medication and are therefore available to provide personalized advice about health and medicine to millions of people.
In the US there are approximately 314,300 pharmacists, and some 67,000 pharmacies; half of which (33,000) are conveniently located within drug stores, grocery stores, department stores, primary care clinics, universities, nursing homes, hospitals and prisons. In 2019, over 4.4bn retail prescriptions were filled throughout the US. Similarly, in England, there are some 42,990 registered pharmacists; 32,000 of whom work in 11,700 community pharmacies. Every day in England, approximately 1.6m people visit a pharmacy and for 89% of them a community pharmacy is within a 20-minute walk from where they live. Each year community pharmacies in England dispense over 1bn prescriptions.
The fact that pharmacists are rapidly evolving from a focus on product preparation and dispensing to becoming significant healthcare destinations is welcomed by both the UK’s Royal Pharmaceutical Society (RPS), the Royal College of General Practitioners (RCGP) and NHS England. Three 2016 reports demonstrate this: two published by the RPS and one published jointly by the RCGP and NHS England.  In September 2016, a RPS report entitled, Community Pharmacy Forward Viewset out a vision to expand and improve pharmacy services by: (i) facilitating personalised care for people with LTCs, (ii) acting as a trusted, convenient first-port-of-call for healthcare advice and treatment, and (iii) providing a hub for neighbourhood health and wellbeing. The report was complemented by another, published in November 2016, entitled Frontline pharmacists: Making a difference for people with long term conditionswhich argued that the expertise and clinical knowledge of pharmacists must be fully utilised to support people with LTCs and help them to achieve the desired outcomes from their medicines, thereby making more efficient use of NHS England’s resources. Such views were echoed in the General Practice Forward View, a report published in April 2016 by the RCGP and NHS England. The report suggested that pharmacists were, “one of the most underutilised professional resources in the [healthcare] system” and suggested that there was a need to, “bring their considerable skills into play more fully” and promote the need for pharmacists to be part of the broader health practice team.

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Pharmaceutical companies

Pharmaceutical companies have an incentive to reduce nonadherence with innovative solutions. When patients fail to take their prescribed medications, not only does their health deteriorate and health providers lose money, but doctors often change medications. This translates in a potential loss to the pharmaceutical company. Some experts estimate nonadherence in the US costs the pharmaceutical industry US$30bn a year in lost revenues, which others suggest is the tip of the iceberg.
Apps using behavioural techniques to reduce nonadherence

Over the past two decade, reducing nonadherence to medication has sought solutions in smartphone apps embedded with psychological techniques to encourage users to change their behaviour. Recent studies suggest that 90% of total time on mobile phones is being spent on apps and individuals may spend an average of 30 hours per month on apps. Such preoccupation raises the possibility that apps could be utilized by healthcare providers and their patients to reduce nonadherence.
Behavioural science’s  signature policy is set out in the 2008 book  Nudge, which looks at how people make decisions and applies this to healthcare. Nudges are a particular type of behaviour change intervention, which steer people in certain directions while maintaining their freedom of choice. The key insight is that changing the way choices are presented to people can have a significant impact. We end this Commentary by briefly describing some studies that have examined apps embedded with ‘nudge’ techniques to address the nonadherence to medication challenge. But first, we describe the rise in the influence of behavioural techniques in health policy.

The rise in the influence of behavioural techniques on health policy

In the early 2000s, both the US and UK governments began to explore how psychological and behavioural techniques could be used to improve public policy and healthcare, while maintaining a significant element of personal choice. In 2003, policy makers in the US were influenced by a paper entitled ‘Libertarian Paternalism’, published in the American Economic Review. Its authors, Richard Thaler, a University of Chicago economist and Cass Sunstein, a Harvard University  Law School professor, suggested that it is both possible and legitimate for private and public institutions to influence people to make decisions about health and wellbeing without coercing them. In February 2004, the UK’s Prime Minister’s Strategy Unit, published a report entitled ‘Personal Responsibility and Changing Behaviour: the state of knowledge and its implications for public policy’, which described behavioural theories of change  and explored ways the government might employ psychological techniques to influence personal behaviour in order to improve public policy. In 2008, Thaler and Sunstein published a book entitled Nudge’, which described how behavioural techniques and mental processes could be used to ‘nudge’ people and groups, rather than ordering them, to do things expected to improve public policy and reduce costs. In 2009, the US government recruited Sunstein to head the Office of Information and Regulatory Affairs (OIRA) and streamline regulations. In 2010, UK Prime Minister David Cameron established the Behavioural Insights Team (BIT) (referred to as the ‘Nudge Unit’) in 10 Downing Street, which was headed by David Halpern, the first author of the 2004 Strategy Unit Report referred to above. This was the first formal and systematic application of behavioural insights to public policy. In 2014,  President Obama set up a similar unit - the Social and Behavioral Sciences Team - in the White House. Over the past decade, similar units have been set up by governments throughout the world, the word “nudge” and ‘Nudge Units’ have become common place in social and public policy, and the application of behavioural techniques, have become a significant aspect of public sector management. Nudge techniques  have been employed to reduce the burden of nonadherence to medication.
Apps to nudge people to adhere to medication

Over the past decade, there has been a plethora of apps launched to tackle nonadherence to medication. A December 2015 study published by the UK’s Health Foundation entitled Behavioural Insights in Healthcare, suggested that “nudge-type” interventions could, “improve rates of medication adherence, particularly for chronic conditions”. In September 2018, Public Health England published a similar report entitled, Improving People’s Health: Applying behavioural and social sciences to improve population health and wellbeing in England. These and other studies reflect the prominence gained in recent years of the potential benefits behavioural and social sciences can make to improving peoples’ health.
Limited use of ‘nudge’ techniques

A research paper entitled, “Behavior Change Techniques in Apps for Medication Adherence” published in the May 2016 edition of the American Journal of Preventative Medicine drew attention to the vast and growing number of apps promoting medication adherence available in the two largest app repositories: the Apple App Store and the Google Play Store. The authors identified and coded 166 medication adherence apps according to 96 established behaviour change techniques and found that the apps only used a limited number of these, and “do not appear to have benefitted  from advances in the theory and practice of health behaviour change”. The most commonly included behaviour change techniques were “action planning” and “prompt/cues,” which were included in 96% of apps, followed by “self-monitoring” (37%) and “feedback on behaviour” (36%). The authors of the study concluded that the apps did not appear to have benefitted from “advances in the theory and practice of health behavioural change”.
Four research studies conclude that apps are using behavioural techniques sub-optimally

Four research papers published between 2017 and 2020 in the Journal of Medical Internet Research assessed thousands of apps embedded with behavioural techniques to address medication adherence in different regions of the world and all reached similar conclusions to the 2016 paper in the American Journal of Preventative Medicine mentioned above: that apps designed to enhance medication adherence use ‘nudge’ techniques sub-optimally.
In the April 2017 edition of the Journal of Medical Internet Research, a paper entitled “Assessing the Medication Adherence App Marketplace from the Health Professional and Consumer Vantage Points”, identified  824 adherence apps and evaluated 645 of them. Researchers found that the quality of the apps “varied considerably”.  A 2018 review paper published in the same journal,  provided one of the first comprehensive assessments of medication adherence apps in terms of their evidence base, medical professional involvement in their development and the strategies they used to facilitate behaviour change and improve adherence. Researchers identified 5,881 apps, tested 1,486 according to predetermined criteria and concluded that there was, “a concerning lack of healthcare professional involvement in app development and evidence base of effectiveness”.  
A paper entitled, “Using Health and Well-Being Apps for Behavior Change” published in the July 2019 edition of the Journal of Medical Internet Research, provides a systematic review of a large sample of healthcare apps marketed in Australia. The initial search identified 212,352 apps, from which 5,018 were identified using a priori key search terms.  Of these, 344 were classified as behaviour change apps and were reviewed and rated. Conclusions suggested that only a limited number of the apps were found to be using behavioural change techniques expected to promote and sustain lifestyle behavioural change and improved health. 
And finally, a research paper entitled, “Quality, Functionality, and Features of Chinese Mobile Apps for Diabetes Self-Management: Systematic Search and Evaluation of Mobile Apps” published in the April 2020 edition of the Journal of Medical Internet Research evaluated apps that are available to millions of people in China living with diabetes and designed to help them self-manage essential medications they are required to take regularly throughout their lives. Among 2,072 apps identified, 199 were selected based on the authors’ criteria and 67 apps were analysed.  Conclusions were similar to those in the previous studies mentioned in this section and suggested that the, “general quality” of the apps was “sub-optimal”.
Nonadherence to medication is a vast and rapidly growing killer epidemic, which is under reported, under-treated and cost healthcare systems billions. This is partly because no healthcare stakeholder has assumed responsibility for denting the burden of the epidemic. Thus, nonadherence is an orphan issue. More recently, the confluence of mobile telephony and behavioural techniques has held out a promise to reduce nonadherence. However, research has suggested that while there is a proliferation of mobile apps embedded with behavioural techniques specifically designed to lower the burden of nonadherence to medication, the overwhelming majority of these are not using tried and tested behavioural techniques optimally. This suggests that there is an opportunity to significantly improve nonadherence to medication by optimally utilising behavioural techniques and digital technology.

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