Need for an adherence platform: recently launched Journal of Patient Compliance
The need for a platform where all stakeholders can communicate and exchange ideas on how to improve patient adherence and health outcomes is much needed if this important issue is going to solved.
The Journal of Patient Compliance was just launched this month. JPC is a peer reviewed Journal that looks into the ideal way in which patient compliance could be enhanced. The Journal is targeted towards pharmaceutical companies, physicians, pharmacies, health care workers and insurance providers, and is an ideal platform for all stakeholders in healthcare to communicate, negotiate, learn and share methods and strategies to help patients adhere to their medication regime.
Nurse Brittney Wilson and I have contributed to this inaugural issue in an article, “Choosing Not to Take Medication: How Patients can Help Other Patients get Better” — please click here and turn to page 8.
In this article, we provide examples of how patients can help other patients improve health outcomes (patient identities have been changed to protect confidentiality). One is the story of Leonard who becomes non-adherent because of a treatment’s side effect and later becomes adherent to treatment when he learns the “tips and tricks” of another patient going through the same experiences. The other is the story of Sarah who helps herself become more adherent by helping other patients facing similar treatment issues.
I would love to hear to your thoughts on why patients choose not to take their medications, the need for all key health stakeholders to come together to address the issue of adherence, and on JPC (on the last point, admittedly I’m biased, as I’m on the Editorial Advisory Board, look at me as a comment pipeline to JPC.)
boxcuttersinc 
Why Patients choose to not take their medication vary. The most common are too many annoying side effects, the patient starts feeling better (usually chronic conditions) and the patient feels stigmatized by having to take the medication (usually psychiatric patients). Other less common reasons are that somebody told them that medication was actually bad for them and somebody offered a more holistic/natural way to treat their ailment. I agree that patient stories prevent treatment desertion. Fellow patients don’t have anything to gain and they normalize the situation so the patient doesn’t feel like a freak duet to side effects. I remember one patient who was on Depakote but he stopped his treatment and started having seizures. I had another patient talk to him and it turns out that he was constipated all the time but he never told us! He started taking his medication once the noncompliant patient compliant patient was explained all the things to expect (from a human and knowledgeable point of view). Although doctors want to warn patients about how they will feel, the truth is I don’t take every single medication that I prescribe so all I know are the side effects listed in the box. You can benefit more from a conversation with someone who really knows what to expect and how to solve it.
Thank you so much, Dial Doctors, for the story of non-compliant patient and how he was able to be helped by another patient. As you rightly point out, doctors cannot be expected to have been a patient for all medications they prescribe and unfortunately a long list of side effects on the box only can say so much — insights from patients who have taken it are clearly beneficial.
One of the best documents I’ve found was this nice summary document on MAPS (Medication Adherence Profiling System) which was part of the Boehringer Ingelheim Pharmacy Satisfaction 2009 Medication Adherence Study. Here are the dimensions and key issues:
Reminder tools to address memory and confusion
Enhance communications to address perceived ineffective communications
Financial assistance to address monetary concerns
Heighten transparency to address distrust of healthcare providers
Promote regimen to address not taking medication as prescribed
Practice discretion to address interpersonal discomfort and social barriers
Empower the patient to address perceived negative consequences
Confront avoidance to address denial and fear
Demonstrate efficacy to address the perception that medication doesn’t work
Allay concerns to address negative attributes of medication
Continue touchpoints to address the lack of belief in the importance of ongoing therapy
The document goes on to give sample strategies and tactics for each dimension.
But, I’ve also posted other things on my blog (www.georgevanantwerp.com) including several studies showing that patients don’t even know they are supposed to refill their medications. There are lots of issues to address from simple health literacy to more complex cultural or side effect issues.
Good posts and I agree that there are many reasons including stigma, side effects, and lack of understanding (all of which MDs should be addressing as part of the relationship. Another factor is cost or, more broadly, benefit design. It acts as an amplifier of all the above reasons not to take medications. Simply put, if you don’t fully understand the risk-benefit of taking medication regularly and also feel that it impinges on your self-image and lifestyle, the fact that you’re paying for the inconvenience makes it even easier to stop.
A more complex issue is so-called step therapy, i.e. “fail first” benefits that require failure of an alternate (and cheaper) medication before you can obtain the one the MD prescribed. Both of these typically occurs at the pharmacy counter, i.e. “This will cost HOW MUCH??” or “So my doctor has to prescribe something ELSE?” Many patients simply walk away and end up with no medication. There is an abundant and growing scientific literature describing these unintended consequences of formulary controls in a range of disease areas. It seems that health plans are assuming that people exercise rational decisionmaking in their healthcare decisions. It’s much more complex than choosing the cheapest alternative when the cheapest short-term solution is no treatment.
Dr Kim reminds us of the cost-cutting measures employed by health insurers and the pharmacy benefit managers (PBM) who work for them. Step therapy and fail first are only in place for the benefit of insurers. As Dr Kim points out, they have a negative impact on patient care. The CEO for Express Scripts, a PBM, probably illustrated this “savings-first, patients-second” attitude when he said, “Our whole model is switching people to lower cost drugs. The more money my shareholders make, the more money I make.” — St Louis Dispatch http://www.stltoday.com/business/article_5b8b0a4c-0484-5fe8-a08d-d6f2a99bda8f.html
Michael Rooney (Healthcare Sales, Marketing and Policy Advocate) comments —
“if its advertised, its prior-authorized.” So said the Director of Medicaid in a State to remain nameless. Our challenge is to ensure patient awareness and action as well as payer receptivity. Studies such as these answer just one side of the equation.
Dan Gabree, Client Director at Symphony Services (@dgabree) comments:
“Perhaps the question to ask is why some DO take their medications with regularity. As the article suggests, it is not always a matter of choice not to take the medication, but some patients even overcome the occasional mental lapse fairly well. What is it that drives the compliant patients to be successful? What drives them to make sure they take the medications?”