Keywords: Medication, adherence, compliance, shared decision making, patient participation, health care costs.
Citation: Finn NB. Addressing the problem of medication non-participation. J Participat Med. 2014 Oct 10; 6:e13.
Published: October 10, 2014.
Competing Interests: The author has declared that no competing interests exist.
Caroline is a 69 year old woman who loves to cook and spend time with her granddaughter. She suffers from high blood pressure and diabetes. She sees her doctor every 3 months and fills the prescriptions for diabetes and high blood pressure medications that the doctor orders from the pharmacy. The diabetes pill has to be taken 3times a day and Caroline has established a routine of leaving it by her glass in the kitchen and taking it after each meal. However, when she is eating out, visiting friends or not feeling like eating, she will often forget the pill. Her high blood pressure pill, on the other hand, is supposed to be taken once a day, in the morning, on an empty stomach and she makes sure that the minute she arises she takes the pill as regularly as she brushes her teeth.
Medication non-participation is a major problem for patients, patient advocates, clinicians, health care systems, payers and other health care stakeholders. There are 3.2 billion prescriptions dispensed annually to patients in the United States among a population of 316.2 million citizens. Fifty percent are not taken as prescribed. 
Some patients take partial doses of their medication but never complete the full course of recommended treatment; some never even fill their prescriptions; and some take one or more of their medications regularly, but ignore several others. This has a major negative effect on patient outcomes, since more than 125,000 Americans die annually due to poor medication participation. 
There is also mounting evidence that non-participation is associated with other adverse outcomes and higher costs of care. Moreover, this problem is likely to worsen as the US population ages and takes multiple medications to treat chronic conditions.
The patient-centered medical home is a model of care that many health institutions and group practices are striving to achieve. This model of care is based on the concept of physicians, patients, caretakers, nurse practitioners, physician assistants, therapists, pharmacists, and other health care professionals, working as a team and engaging in shared decision making. Also implicit is the idea that digital communication tools, now abundantly available, are used by the team to help foster the best care.
To address medication non-participation, this team strives to ensure that treatment plans are clear to the patient. This includes: clear directions about how and when to fill prescriptions; the proper way to take medication; the reasons why the medication is necessary in the first place and whether there are any diet, fitness or lifestyle modifications associated with a prescription. Hopefully, patients will participate because they have been able to share in the decisions about what treatment options are best for them.
Unfortunately, in practice, there are multiple, complicated reasons why non-participation is so prevalent. They include communication, risks vs benefits, cost, and various other factors.
During a rushed office visit, there may be many missed messages, as well as instructions that are misunderstood. Medication issues are among the most common of these misunderstood messages. Thus, patients often walk away from the physician visit confused about why a medication is important, and how to take it safely and effectively. They do not know what to expect regarding side effects, and how to incorporate a new medication into their treatment regimen.
Communication is most effective when it is reciprocal. However, physicians do not always have the time to ensure that prescription orders are completely understood. Patients, who may not be feeling well or get overwhelmed with the amount of information they are asked to absorb, often forget to ask questions and seek clarification regarding how to take a medication or ask about its side effects. Too often they don’t even understand well enough to know what questions to ask.
The Risk vs Benefit Proposition
Many patients weigh the risk of a medication’s potential adverse side effects against the potential benefits of the treatment. Some will simply decide to opt out. Example: a woman who has had breast cancer is prescribed tamoxifen as a deterrent to recurrence. The pill is known to occasionally cause a stroke. This individual has to measure the risk of developing a stroke against the benefit of avoiding another breast cancer. She has to weigh the risk/benefit of such a pill and talk with her physician to achieve the best overall outcome.
The Cost Factor
For many patients, the choice of whether to take a medication must be weighed in light of their finances. For some patients it comes down to either keeping one’s home or putting food on the table vs. taking an expensive medication.
In a survey of 1,506 adult patients, over 25% reported cost-related medication non-participation. Among the respondents, 20.7% disclosed concerns about their ability to afford medication. Additionally, those who reported concerns about financial instability, food insufficiency, housing problems, and inadequate health insurance coverage were more likely to be non-participatory. These findings point out the need for even greater collaboration and shared decision efforts among patients and the health care team to work out issues of medication affordability. 
In a study of 7,177 Medicare beneficiaries, approximately 7.5% of the respondents reported mild cost-related medication non-participation and another 8.2% reported severe cost-related medication non-participation. Disabled beneficiaries younger than 65 years who reported severe cost-related medication non-participation were more likely to have at least one emergency room visit, even when adjusting for other factors that affect utilization. 
Other Reasons for Poor Medication Participation
There is also unintentional non-participation, when patients may simply be careless or forgetful. Most of the time, this involves patients who skip doses or delay taking them. The medical team must address these cases individually, attempting to understand the patient’s background and issues. Among the personal characteristics that need to be considered are:
- Age, race, gender, mental health, health literacy, education, cultural understanding, language barriers, and ability to afford the treatment.
- The health condition. Is it asymptomatic or chronic? With asymptomatic conditions, patients often assume that medication is not needed. In patients with chronic conditions, they may grow tired of taking their medication. Participation in patients with chronic conditions has been shown to drop significantly after taking the medication for 6 months.
- Type of therapy. Is the treatment complex or likely to cause multiple side effects? Unpleasant side effects frequently lead patients to conclude that taking a medication is not worth the benefit.
- Complexity of the treatment. If the treatment is complex, patients are often non-participatory because they may not understand how to administer it. Patients sometimes stop a medication prematurely when they make the false assumption that a shorter course will resolve the problem.
Frequently, we simply do not know why people take some pills and not others, or only take their pills for a limited amount of time and then stop them. In patients who take antidepressant medication, participation drops radically after 3 months. There is also a significant variation in participation among patients who take a once daily dosage (84% participation) compared with patients who take a 3-times-a-day dosage (approximately 59% participation). 
Non-participation is a risk factor for a variety of poor health outcomes. For example, many patients stop taking an antibiotic as soon as they are feeling better in spite of the warnings by their doctors, pharmacists, and the literature that comes with a medication that they should complete the entire prescription.
Studies show that the risk of non-participation is very high when patients cannot read or understand basic written medical instructions. One large study of over 2,500 patients found that nearly one-third had marginal or inadequate health literacy. Among these patients, 42% misunderstood directions for taking the medications; 25% misunderstood the scheduling of their next appointment to go over their treatment, and nearly 60% were unable to read and understand an informed consent document. 
Language barriers can also contribute to lack of understanding about how to take a medication. Age is also a factor, as older patients tend to have significantly more problems understanding their medical regimens.
In a study of asthmatic patients who were given extensive, high-quality information on the use of daily inhaled corticosteroids, only 38% participated in their medication regimens. The other 62% continued to mistakenly believed that their medication should only be taken when they were symptomatic. The study was designed to evaluate the degree to which variations in reported participation to medication for asthma could be explained by two sets of beliefs: perceptions of asthma and perceptions of asthma medication (beliefs about its necessity and concerns over its use). The findings showed that non-participatory behaviors were associated with doubts about the necessity of medication and concerns about its potential adverse effects, and not the more negative perceived consequences of illness. 
The Impact of Recent Medicare Regulations
Recent Medicare regulations tend to further complicate medication participation issues. The Center for Medicare and Medicaid issued a mandate to all pharmacies and insurers, effective January, 2014, that all patients on Medicare Part D must give their personal permission before prescriptions can be filled. Since this requirement can be met in person at a local pharmacy, this problem primarily has an impact when the prescription is sent by the provider to a mail order pharmacy. This has led to extensive confusion, frustration and delays in patients’ receiving their medication and leaves the patient with three alternatives:
- Go back to manually filling out paperwork that includes a person’s signature and sending it to the pharmacy.
- Accept the inevitable delays and inefficiencies of reaching someone by phone at the pharmacy to provide personal permission, after your doctor has e-prescribed or faxed a request for a refill or new medication.
- Obtain all of your medications from a local pharmacy, which, in some cases, will result in significantly higher copays. (Personally picking up the medication is considered permission).
A patient, who has been filling most of her prescriptions through a nationally known pharmacy benefits management company, needed refills for four of her medications. She called the doctor’s refill line and assumed that she would receive the prescriptions within several days. Without prior notification that permission was needed, the patient received several automated messages from the pharmacy benefits management company asking for permission to fill these prescriptions. She is baffled by the fact that her doctor has issued orders for these medications, so why would her permission be needed? Her return calls go to an automated system, leaving no easy way to reach the company to provide the needed consent. This delay extended to over a month before the patient finally received her medications.
The company’s patient permission requirement was intended to eliminate unnecessary expenditures on medications that were no longer needed. While this may be true, it contributes to increased non-participation because:
- The policy has not been communicated to patients and, therefore, they are blindsided regarding how to get refills and new prescriptions resulting in frequent delays.
- The absence of a hotline to facilitate the process results in many delays and makes it easy for patients to give up and stop taking the medication.
- Individuals on Medicare Part D represent a growing portion of the elderly population. This policy adds to their confusion and non-participation.
Non-Participation Leads to Increased Hospital Admissions, Readmissions, and Visits to the ER
Non-participation carries a huge economic burden. In 2011, the aggregate cost for nearly 39 million hospital stays totaled $387 billion. Between 33% and 69% of medication-related hospital admissions in the U.S. are due to poor participation with total cost estimates for non-participation ranging from $100-$300 billion annually. 
For example, non-participatory patients with high blood pressure have a 5.4 times greater risk of hospitalization, rehospitalization, or premature death than participatory patients. Non-participatory patients with diabetes have a risk of hospitalization that is 2.5 times higher than participatory patients. Non-participation increases the likelihood of preventable disease progression, increased hospitalizations, avoidable doctor and emergency room visits, and other problems which can significantly increase costs. 
Non-participation to medications is common for patients with cardiovascular diseases as well. After an acute myocardial infarction hospitalization, 24% of patients did not fill their medications by day 7 of discharge. The chance that they will return to the hospital within 30 days is very high. 
Hospital readmissions have been a growing and costly problem for many years. When the coordination and collaboration between the hospital discharge team, the patient and the primary care physician is not managed effectively, with appropriate follow up, medication non-participation will often lead to a hospital readmission. The discharge check list should include whether a patient’s medications are up to date, and whether the patient has been thoroughly briefed on medications. And it should outline the followup plan. The challenges that patients face at home following discharge from the hospital must also be taken in to account by the team to insure a successful discharge outcome.
Interventions to Improve Participation
Technology tools and improved management programs can help empower and enable patients to stay on track with their medication and to improve patient transitions from an inpatient setting to the home setting. These include:
- Patient education approaches such as pamphlets, videos, discussions with health care professionals, patient diaries, self-reports and questionnaires.
- Sessions between patient and pharmacist to help answer questions and overcome barriers.
- Text messages or calls — daily reminders texted to cell phones or called to patients.
- Electronic medication monitors that track pill counts and improve dosing schedules or the use of pill boxes to organize daily doses.
- Better continuity of care when a patient is released from the hospital or emergency room, including assigning a point person to follow up, and ensure that medications prescribed are filled, understood, and taken.
There are several innovative pilot programs that seek to treat patients more effectively in the home, help them remain stable, out of the hospital and out of the ER.
In Massachusetts, Iowa and Minnesota, paramedics are being trained to go into the home and work with chronically ill patients, or those who have just been released from the hospital. They work with patients to ensure that they understand their discharge orders, how to follow their treatment recommendations and how to take their medications. These programs have proven to cut down on hospital readmissions and ER visits.
In SUNY Medical University, social workers visit patient’s homes to ensure that they follow up with their primary care physician following a hospital stay. Over a two-year period, the program has helped the hospital reduce readmissions by 50%.
These paramedics and social workers have the opportunity to view the patients living conditions and set up a schedule for taking medication. Their efforts help patients avoid additional hospital admissions and ER visits.
The health care collaborative team that includes patients, providers, caretakers and other health care professionals needs to create a culture of medication participation by encouraging best practices, as well as understanding and using all available methods and tools.
- U.S. and World Population Clock. United States Census Bureau. Available at: http://www.census.gov/popclock. Accessed October 1, 2014. ↩
- Chronic Diseases: The Leading Causes of Death and Disability in the United States. Centers for Disease Control and Prevention, May 9, 2014. Available at: http://www.cdc.gov/chronicdisease/overview/index.htm?s_cid=ostltsdyk_govd_20. Accessed October 1, 2014. ↩
- Mazer M, Bisgaier J, Dailey E, Srivastava K, McDermoth M, Datner E, Rhodes KV. Risk for cost-related medication nonadherence among emergency department patients. Acad Emerg Med. 2011 Mar;18(3):267-72. ↩
- Blanchard J, Madden JM, Ross-Degnan D, Gresenz CR, Soumerai SB. The relationship between emergency department use and cost-related medication non-adherence among Medicare beneficiaries. Ann Emerg Med. 2013 Nov;62(5):475-85. ↩
- Leslie R Martin, Summer L Williams, Kelly B Haskard, and M Robin DiMatteo. The challenge of patient adherence. Ther Clin Risk Manag. Sep 2005; 1(3): 189–199. Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1661624/. Accessed October 1, 2014. ↩
- Franks TJ, Burton DL, Simpson MD. Patient medication knowledge and adherence to asthma pharmacotherapy: a pilot study in rural Australia. Ther Clin Risk Manag. 2005 Mar;1(1):33-8. ↩
- Increasing Medication Adherence in America. Prescriptions for a Healthy America. Available at: http://adhereforhealth.org/our-priorities/q-a/. Accessed October 1, 2014. ↩
- Mazer M, Bisgaier J, Dailey E, Srivastava K, McDermoth M, Datner E, Rhodes KV. Emergency department visits. Acad Emer Med. 2011 Mar;18(3):267-72. doi: 10.1111/j.1553-2712.2011.01007.x. ↩
- Ho PM, Bryson CL, Rumsfeld JS. Medication adherence: its importance in cardiovascular outcomes. Circulation. 2009; 119: 3028-3035. Available at: http://circ.ahajournals.org/content/119/23/3028.full. Accessed October 4, 2014. ↩
- Hofmann G. Medication Compliance: Why Don’t We Take our Meds? Psych Central. Available at: http://psychcentral.com/blog/archives/2013/05/02/medication-compliance-why-dont-we-take-our-meds/. Accessed October 4, 2014.
- Bosworth HB, Duke University Medical Center, National Consumers League. Medication Adherence: Making the Case for Increased Awareness.. Available at: http://www.scriptyourfuture.org/wp-content/uploads/2014/02/NCLDuke_BriefingPaper_FINAL.pdf. Accessed October 8, 2014.
- Brown MT, Bussell, JK. Medication adherence: WHO cares? Mayo Clin Proc. Apr 2011; 86(4): 304-314.
- Fung B. The $289 billion cost of medication noncompliance and what to do about it. The Atlantic. September 11, 2012. Available at: http://www.theatlantic.com/health/archive/2012/09/the-289-billion-cost-of-medication-compliance-and-what-to-do-about -it/262222. Accessed October 10, 2014.
- Ofri D. When the patient is “noncompliant.” The New York Times. November 15, 2012. Available at: http://wellblogs.nytimes.com/2012/11/15/when-the-patient-is-noncompliant/?_php=true&_type=blogs&_r=0. Accessed October 10, 2014.
- Joynt KE, Jha AK. A path forward on Medicare admissions. N Engl J Med. 2013 Mar 28;368(13):1175-7.
- Mitchell AJ, Selmes T. Why don’t patients take their medicine? reasons and solutions. Advances in Psychiatric Treatment. 2007 Mar;13: 336-346.
- Center for Health Transformation. The 21st Century Intelligent Pharmacy Project: The Importance of Medication Adherence: Saving Lives and Saving Money by Improving Medication Adherence through a Coordinated Approach to Integrated health care (white paper); 2010. Available at: http://www.mirixa.com/uploads/pdfs/2010_-_CHTMedAdhrWp.pdf. Accessed October 10, 2014.
- IMS Institute for health care Informatics. Avoidable Costs in U.S. Health Care: The $200 Billion Opportunity from Using Medicines More Responsibly. June 2013. Available at: http://www.imshealth.com/deployedfiles/imshealth/Global/Content/Corporate/IMS%20Institute/RUOM-2013/IHII_Responsible_Use_Medicines_2013.pdf. Accessed October 10, 2014.
Copyright: © 2014 Nancy B. Finn. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.