Medication non-adherence has a staggering impact on the industry’s ability to serve patient well-being and achieve growth. Up to 10% of hospital admissions in the U.S. can be attributed to medication non-adherence.1 It is by far the leading contributor to preventable healthcare costs in the United States, generating $300–528.4 billion in unnecessary medical costs annually, and claiming 275,689 lives each year due to prescribed medications not taken or not taken as prescribed.2 The costs are simply too high.
It seems that it would be a simple thing. A patient is diagnosed and prescribed a treatment to correct or mitigate a condition. Taking the medication properly should follow. However, most patients have very little time with their physician to learn all aspects of their prescribed medication. As a result, anxiety abounds on many levels and failure to take the medication, or adhere properly, ensues. Patient support programs have been working to reverse these trends. This is particularly true in the therapeutic areas of neurology, oncology, immunology, rare/orphan disease, and the emerging cell and gene therapy landscape.
We have found the most effective adherence programs are those connecting with patients immediately after the prescribing decision has been made by a specialist. Such programs have demonstrated that 92% of patients enrolled in a support program and working with a clinical educator continue on their treatment versus 63% who don’t have a support program. What makes these patient support programs successful? And why are support activities within the first 30 days of the treatment journey so critical to achieving proper long-term adherence and better outcomes?
Start Patient Support Immediately
One of the most anxious times for patients is right after diagnosis when they are waiting to start treatment. Indeed, in research from the 2021 PURE Report,3 50% of the patients responding found the therapy discussion to be a highly stressful period in their treatment journey. This was particularly evident in women versus men.
Therefore, support programs in which clinical educators reach out to patients immediately after the prescribing decision has been made and enrollments are received, will help address this anxiety and keep patients motivated to start their medication. The welcome call needs to educate patients on what to expect over the coming weeks in order to reduce their anxiety. In fact, the 2021 PURE Report indicated that over 50% of patients surveyed felt the most important aspect of the welcome call was explaining the process and establishing expectations for the onboarding process over the coming weeks.
Setting appropriate expectations is particularly true for the many patients who have never been on a specialty drug. Unfortunately, physicians do not always educate patients on the potential for long delays awaiting a newly prescribed specialty therapy to arrive and treatment to start due to the prior authorizations required to obtain insurance coverage. Patients don’t understand why this process for the approval of their therapy can take so long.
Clinical educators need to make sure that these patients understand how important it is to keep their phone handy during the days after they are diagnosed and prescribed treatment, and that they understand who will be calling and why. It is vital that the patient stay in this communication loop so that insurance coverage is established and the medication shipment takes place as soon as possible.
Address the Whole Patient
Patient non-adherence could be linked to many factors. Therefore, one should address the clinical and functional needs of patients along with their behavioral and psychosocial needs when developing a patient support program. Recognizing social determinants of health in sub-groups also brings higher engagement, such as offering native language speaking clinical educators when applicable.
Within this hierarchy of needs, the clinical educator needs to allay patients’ concerns by helping them understand what their future holds in terms of their disease and treatment—not just the process of getting and starting their medication. The clinical educator should address patients’ questions on their condition such as those shown in the figure below, always refraining from providing any medical advice. Patients should have a realistic expectation on how long it will take for them to see a difference in their condition, if at all. For instance, many new therapies focus only on delayed progression rather than improvement.
Therefore, in addition to process, the welcome call should start to address these treatment concerns and be tailored to each individual patient’s situation and emotional health. The 2021 PURE report indicated that two out of three patients are concerned about potential side effects before taking their first dose, and again, this is more evident in women than men. Overall, more than 50% of patients also demonstrated high stress levels over financial and insurance considerations. All of these factors should frame the patient communication and be addressed as appropriate to alleviate patient concern.
Patient Engagement Preferences
One should strive to achieve balance in supporting the patient through these first critical days and weeks, as too much contact could create more anxiety. According to research from the 2022 PURE Report, about 80% of patients preferred weekly (or bi-weekly) check-ins with their support program at the beginning (see figure below). Most of them indicated that this cadence could taper off once they have been on the drug for a while, and last upwards to a quarter; although patients interested in side effects or those who gain emotional support from their patient support program want longer engagements.
In addition to patient outreach, a properly designed patient support program will provide the patient with various means to reach their clinical educator and/or learn more about their disease and treatment from the very beginning. Some companies are setting up programs with a single point of contact to serve as a dedicated guide along the way. Whether patients use a phone call, chat bots, email, or an instructional portal, many patients are finding self-service options empowering.
Interestingly, those using apps are more likely to prefer engagement for shorter periods, only one to two months on average. This phenomenon may be in part due to these patients having everything they need in the app for longer-term adherence support. It may also be in part due to their personality type having less need for emotional support from the support program.
Support models vary, but the 2022 PURE Report indicated that over 50% of those patients surveyed like receiving reminders for taking their medication and appreciate advice on how to handle drug-related side effects and drug interactions. Emotional support and coaching on how to manage the disease were also cited as important and highly valued features in patient support programs.
Work with Both Care Partners and Physicians
One cannot stress enough the importance of care partners in helping the patient navigate the treatment journey. In some cases, such as Alzheimer’s disease, care partners (spouse/adult child) play an even more important role than patients themselves in understanding the treatment therapy and the various nuances of the disease. Care partners should be fully educated on how the therapy will work and how to help the patient adhere to medication, particularly in the first 30 days when anxiety levels run so high.
Physicians also need to be kept in the loop. They may diagnose a disease and prescribe its treatment, but oftentimes they don’t know if their patients have even started therapy, and if so, how they are responding. With the first 30 days being so critical for patient engagement and ultimate adherence, physicians need regular communication on the patient’s progress in the program. A patient support program can provide that feedback loop, but in some instances, physicians are also unaware that a support program is in place. Much needs to be done to improve this vital channel of communication.
Properly Train Your Clinical Educators
As discussed, responding to the individual patient’s emotional, social, and physical needs requires a highly skilled clinical educator. Putting a curriculum in place to train clinical educators on active listening skills, empathetic communication strategies, and motivational interviewing will help make that first 30 days of support truly impactful.
A Case in Point
A pharma company with a rare lung disease medication had patients waiting over a month after enrollment into the patient support program to receive clinical educator support. To remedy this, the program was re-designed so clinical educators spoke to the patient immediately after enrollment to set expectations, provide reassurance, and to avoid patients administering the medication improperly.
Additionally, patient journey workshops were set up to identify and tackle gaps and challenges at various stages. This led to adding extra contact points to make sure patients continued to understand proper administration and overcome key milestone barriers. Within the first three months, early clinical educator involvement led to fewer patients dropping out of the program. It also helped reduce the time between enrollment and the first treatment dose being self-administered by an average of three days.
1. Mongkhon P, Ashcroft DM, Scholfield N, et al. BMJ Qual Saf. 2018;27(11):902 914. “Hospital Admissions Associated with Medication Non-Adherence: A Systematic Review of Prospective Observational Studies.” May 23, 2018.
2. Linda Morini & Emma Zheng, Adheris Health: “Medication Non-Adherence: It’s Not Just a New-to-Therapy Issue,” 2022, pg. 2.
3. Nuvera PURE report is an independent, industry benchmark of patient and HCP satisfaction, utilization, and evolving needs across patient support programs conducted by Nuvera Life Science Consulting, an Ashfield Engage company. It is based on an annual survey of 511 patients in patient support programs for diseases in three therapeutic areas: oncology, neurology, and immunology.