Non-adherence is a major barrier limiting the benefits of clinically effective treatments. Medications that have proven their potential in clinical trials often do not deliver on that potential in the real world because of non-adherence. The numbers speak for themselves: Adherence rates for chronic treatments average 50%.1 As shown in previous articles in this series, low adherence rates have a significant impact on the quality of life and life expectancy for patients, as well as much broader social and financial consequences. A recent literature review found that per patient costs from non-adherence-related complications range from an average of $1,000 to over $40,000. In the United States alone, the total healthcare cost impact of non-adherence in the form of failure to follow prescribed treatments is as high as $290 billion annually.2 Non-adherence is a global phenomenon, independent of the culture of the patient, gender, age, or socioeconomic status.
What causes non-adherence? Early in this series of articles we examined a number of reasons patients might not understand their condition, prefer to ignore it, forget to take their medication, or in most cases, make a conscious decision not to follow their treatment for unique reasons that that are not entirely rational. Whatever the reason, such patients adopt the irrational behavior of not seeking the best health outcomes. To help patients change their behavior, providers, the pharmaceutical industry, scientific medical societies, and others have developed numerous strategies. These range from simple approaches, such as providing patient information services or developing apps, to more sophisticated approaches such as electronic pill boxes. While these tools typically assist with the tracking of adherence, the price of many such devices makes them impractical on a large scale, and they often do not significantly decrease non-adherence, particularly in those patients who were not already motivated to adhere.3 The assumption that by simply providing better information, the patient will change his behavior is flawed. Perhaps this would work if we were all perfectly rational “econs” but as irrational human beings more is required.
With or without such devices, major efforts to help patients follow their treatment and better manage their conditions fall within the services commonly known as Patient Support Programs (PSPs). Some PSPs are purely informative and provide practical information to patients on topics including disease management and drug management (especially for complex drugs). The channels through which patients receive this information can be limited to printed or electronic materials, but in many cases include face-to-face or remote interventions. While information and patient education are crucial, PSPs that limit themselves to these functions are not particularly effective in improving adherence, not because the information they provide is not helpful, but rather because it is typically not sufficient. Many such programs are greatly appreciated by patients, and on the basis of patient and HCP feedback can appear to yield high impact results. Unfortunately, there is a selection bias at work: The patients who most use and appreciate these programs often tend to be those who are already strongly motivated to follow their treatment. As a result, programs that emphasize education and information are likely to have minimal impact on adherence at a population level.
Other PSPs provide purely behavioral tools; these include reminder systems, symptom trackers, and other resources. These are limited in their effectiveness for essentially the same reasons: Those who use such practical tools are often already motivated to follow their self-care plans to the letter. The usefulness of PSPs is undeniable. However, if we wish to affect the overall adherence rate of the patient population, we must also find ways to engage all patients, across activation levels, motivation levels, and needs – whether it be with information or reminders or other interventions. This can be best achieved by PSPs that incorporate a mix of both informative and behavioral strategies generated by the behavioral science principles that we have addressed throughout this series of articles.
A 2017 meta-study on more than 700 PSP interventions showed a limited increase in patients’ adherence.4 The review determined that there were often biases in the reporting of such studies and that the most typical interventions, such as those designed to be delivered in the offices of treating physicians yielded particularly poor improvement in adherence (although programs delivered through pharmacists seem to fare better). This is troubling, but provides an important cautionary note regarding the benefits of continuing to provide programs that are merely more of the same.
A 2015 meta-study of 17 selected PSPs covering more than 10,000 patients offered a more optimistic view. This study considered the PSP influence on adherence for patients suffering from inflammatory and immunologic diseases such as rheumatoid arthritis, osteoporosis, ulcerative colitis, or multiple sclerosis5. The PSPs examined employed information strategies, behavioral strategies, or a combination of both strategies together. The results showed that on average adherence increased by:
While this study was restricted to certain pathologies, these results suggest that a careful mix of informational and behavioral strategies may generate significant impact and avoid the inconclusive results of less comprehensive interventions.
In 2003, the WHO cited R.B. Haynes who said, “increasing the effectiveness of adherence interventions may have a far greater impact on the health of the population than any improvement in specific medical treatments.”6 However, we have seen that PSP interventions are of debatable value when they are not carefully constructed. The need for PSPs seems evident but they must be designed appropriately. One promising design approach is PSP personalization as discussed previously in this series. Through personalization, the mix between communication of information and more coaching-oriented approaches can be adjusted on an individual basis, and the specific information, behavioral content, and the tone of these interventions can be tailored to suit the individual patient.
Such highly personalized PSPs were rare in the past due to the costs involved. However, thanks to advances in digital and mobile technology, the personalized approach can now be applied on a larger scale. In addition, recent developments in the behavioral sciences, discussed in previous articles (see article 4 << Two systems of thought: why “rational” people make “irrational” choices >>), provide greater understanding of the decision-making process of each patient and can be far more effective in determining appropriate individual nudges for patients based on their attitudinal profiles. Digital technologies that leverage behavioral science techniques effectively produce significant improvements in personalization and the patient experience.
The effectiveness of personalized approaches using digital technologies has already been demonstrated in consumer-based industries such as e-commerce and banking. Companies like Netflix, Amazon, Rakuten and others thrive thanks to the personalization approaches they use. The same principles can be applied to patients; consider a chat-bot with a virtual “patient-coach” that helps the patient manage his disease and treatment that is always available via smartphone, tablet, or computer. The patient responds to a questionnaire designed according to behavioral science theories and receives adherence nudges in the form of messages specifically adapted to their needs and identified behavioral drivers. This adaptability even includes the tone of the message received, the time of the day at which it pops-up, etc.
Such “chat-bots” have recently been launched in the healthcare sphere, and their impact is yet to be measured. However, they open a whole new vista for PSPs and for addressing the issue of non-adherence, allowing the positive influence of healthcare providers to be extended into the patient’s daily life.
1. Capgemini, Estimated Annual Pharmaceutical Revenue Loss Due to Medication Non-Adherence, (Accessed: July 23rd 2020), https://www.capgemini.com/wp-content/uploads/2017/07/Estimated_Annual_Pharmaceutical_Revenue_Loss_Due_to_Medication_Non-Adherence.pdf
2. Cutler, Rachelle Louise, Fernando Fernandez-Llimos, Michael Frommer, Charlie Benrimoj, and Victoria Garcia-Cardenas. “Economic Impact of Medication Non-Adherence by Disease Groups: A Systematic Review.” BMJ Open 8, no. 1 (January 2018): e016982. (Accessed: July 23rd 2020) https://doi.org/10.1136/bmjopen-2017-016982.
3. Niteesh K. Choudhry and others, Effect of Reminder Devices on Medication Adherence, JAMA Internal Medicine, 01 May 2017, 177(5):624-631 doi:10.1001/jamainternmed.2016.9627,
4. Vicki S. Conn, Medication adherence outcomes of 771 intervention trials: systematic review and meta-analysis, Preventive Medicine Volume 99, June 2017, Pages 269-276 doi: 10.1016/j.ypmed.2017.03.008
5. Chakkarin Burudpakdee and others, Impact of patient programs on adherence and persistence in inflammatory and immunologic diseases: a meta-analysis, Patient Preference and Adherence 2015:9, pages 435–448, doi: 10.2147/PPA.S77053
6. Sabaté, Eduardo, and World Health Organization. Adherence to Long-Term Therapies: Evidence for Action. Geneva: World Health Organization, 2003.