This blog is one in a series featuring the perspectives of patients, caregivers and patient advocates. PQA supports person-centered care and is committed to engaging individuals and communities as partners in its work to improve safe, effective and appropriate medication use and address issues that impact a person’s ability to access and use medications. Brian J. Isetts is a member of the PQA Patient Advisory Council who is a pharmacist, former CMS Health Policy Fellow and Professor Emeriti. Brian now lives in Colorado near his four grandsons enjoying golfing, fishing and traveling. The perspectives shared are those of the author.
It has been a long and arduous journey from the days when patients complied without questioning a physician’s orders, towards the aspirational goal of collaborative shared decision-making as equal partners. Although health care providers still have a way to go, there has been some progress towards this goal. My own personal journey towards true collaborative person-centered health care provides insights on how we might be able to accelerate this transformation, specifically as it comes to the use of medications.
The era of health care consumerism commenced shortly before I began my four decades-long career as a pharmacist. The concept of empowering consumers to actively navigate their own health care decisions, choices and finances has broad support. When dispensing prescriptions upon graduation from the University of Wisconsin I did my best to make sure patients knew how to take their medications. This was prior to the advent of a systematic care process that serves as the foundation for today’s comprehensive medication therapy management services.
In retrospect, I cringe to think that I may have been contributing to a person’s drug therapy problems by not first assessing the intended medical purpose, effectiveness or safety of those medications.
But that all changed one day when I dared to truly listen to patients while serving as pharmacist-in-charge for one of the Minnesota Pharmaceutical Care Demonstration Project sites. A woman in her mid-30’s was receiving a prescription for a topical medication. When inquiring about the intended medical purpose she said that she had leishmaniasis, a subtropical parasitic skin condition. And then she asked if I knew what that was.
That’s when I set aside my ego and said that I was not familiar with it and asked her to tell me what she knew about the condition. Her face lit up like I had given her a brick of gold because a health care professional valued her knowledge and cared to learn from her. I now routinely ask individuals to tell me what they know about their medical conditions and medications, which has been more valuable to my life-long learning than many of the continuing education programs I’ve attended.
Later in my career I had the opportunity to take a sabbatical at the Centers for Medicare & Medicaid Services (CMS) in Baltimore. It was scheduled as a six-month experience working in the Medicare Part D Drug Program to improve the standards and quality of Comprehensive Medication Review services. This was shortly after the CMS Innovation Center (CMMI) opened and Don Berwick, MD, MPP, FRCP, began serving as CMS Administrator. I subsequently received an invitation to extend my sabbatical at the CMMI working on a bold national initiative to reduce hospital-acquired conditions, including adverse drug events.
Under the guidance of Dr. Berwick, every CMS quality improvement contract mandated equal and meaningful participation from a patient and family engagement organization. At all of our pacing events patients were always in the room and patients were first on the agenda. After a few months, this engagement strategy empowered patients to tell us what they really felt about our U.S. health care system. And believe me – did we get an earful! And not just about the iatrogenic harms caused by providers and health systems, but also all the demeaning terms and phrases used in medical care every day.
For instance, one of the major national patient safety initiatives was the Partnership for Patients. We soon learned that this project title missed the mark, because if we intended for true collaboration then the project should have been the Partnership WITH Patients. We were then further educated that no one wants to be a patient which resulted in transforming the name of our non-health provider collaborators to Person and Family Engagement Organizations.
One other transformative person and family engagement experience I’d like to share highlights a promising effort to understand and act upon what matters to individuals needing to take medications. The Institute for Health care Improvement has long advocated for Age-Friendly Health Systems through the 4-Ms evidence-based movement focused on “what matters” to individuals in care alignment, mobility, mentation and medications. But the question I keep asking is, “do we really know what matters to persons needing to take medications?”
Early studies of medication self-management focused on an obedience model of medication non-compliance as about 50% of patients were taking medications differently than as prescribed. Another study evaluated the inability of older persons to manage their medications as 42% of older persons were unable to relate the medication to a disease or condition for which they were taking a drug.
Fortunately, a 2008 nursing study of key determinants among older persons who were successfully self-managing medications provided valuable insights into medications being viewed as essential to living orderly and aging well by establishing an older persons confidence in the use of medications as essential for a commitment to health and well-being.
Establishing an older persons confidence in the use of medications emerged as a vital component in understanding and acting upon what matters to individuals. Within a grant from the Health Resources and Services Administration, the Minnesota Geriatrics Workforce Enhancement Program sought to dig deeper into this concept.
While listening to individuals struggling every day taking myriad medications, it was apparent that patients needed help to make sense out of taking medications so that they didn’t have to feel like their medications were managing them. Making sense out of taking medications meant understanding the medical reason for each medication, how they’re supposed to work for them, which safety concerns are specific to them, and then how to take and afford medications.
This was the foundational premise leading to a novel approach for effective medication self-management. Helping individuals understand indication, effectiveness and safety before focusing on how to take and pay for their medications closely mirrors the consistent and systematic process supporting the delivery of comprehensive medication therapy management services. In other words, “what would happen if we equip patients to ‘think like pharmacists?”
The concept of preparing patients and their families to organize their medication use based on this systematic 4-step pharmacists care process was tested in seven separate focus group sessions with 79 participants ages 62 to 97 years. There were 97% of participants who indicated that this four-step process would improve their confidence in successfully self-managing their medications. These findings and experiences suggest that equipping individuals and families to use this four-step organizational process matters very much to patients and is essential for making sense out of taking medications.
The next significant challenge confronting PQA is the development of meaningful medication experience measures that account for a person’s confidence in the appropriateness of their medications. It isn’t until CMS and other payers reward providers based on what matters to patients will we be able to address the goal of collaborative shared decision-making as equal partners. My own person and family engagement journey highlights the importance of demonstrating humility and valuing the knowledge and preferences of those we serve. Because there is an old adage that rings louder every day, ‘People don’t care what you know, until they know that you care.’