What Centering the Patient Means: A Pharmacy Student Perspective

Arielle Davidson, PharmD Candidate
University of Michigan College of Pharmacy
MOQC Pharmacy Intern
Ann Arbor, MI

Emily Mackler, PharmD, BCOP
Michigan Oncology Quality Consortium
Michigan Institute for Care Management and Transformation
POEM Director
Ann Arbor, MI

While patients and caregivers have the most personal and informative experiences when it comes to health care, they are not always included in the care team. The Michigan Oncology Quality Consortium (MOQC) has found it imperative to center the patient and caregiver voice in everything it does and has created an entire council dedicated to their work, called the Patient and Caregiver Oncology Quality Council (POQC).

I am currently finishing my third year of pharmacy school and will be starting fourth-year rotations in the coming months. I am the Pharmacy Intern for MOQC and am involved with many different initiatives. Early on in my internship, MOQC leaders suggested that I should become involved with POQC and I feel so fortunate to have been able to work with this council for the last two years.

The council was started in 2017 with six members and has expanded to 16 members in its current state. These patients and caregivers take part in various workgroups that were started by members as passion projects, with immense support from MOQC. The current workgroups consist of financial navigation, caregiver and patient resources, Black Voices in Gynecologic Cancer: Understanding Experiences (BVOGUE), and recruitment. The financial navigation workgroup was started to address the overwhelming financial concerns associated with cancer. The caregiver and patient resources workgroup was created in an effort to prioritize caregivers and their needs, along with those of patients. BVOGUE is a project led by a POQC member that works to reduce racial disparities in the care of Black patients with gynecologic cancer. Lastly, the recruitment workgroup was established recently to increase the number of POQC members and promote diversity, equity, and inclusion within the council.

In addition to the dedicated POQC workgroups, members are also incorporated into every other initiative that MOQC has. For example, POQC members have helped to provide feedback on patient-reported outcome methods, various resources, oral chemotherapy program logistics, and much more. They also take part in the Steering Committee, which directs MOQC programs and efforts, as well as the Measures Committee, which chooses what MOQC will collect data on the following term. Full POQC meetings occur every six weeks, with workgroups typically meeting every other week. Members are invited to attend all MOQC regional and biannual meetings, with the opportunity to speak at any meeting.

While POQC is goal-oriented and accomplishes numerous tasks, the defining feature of this council is the culture that has been created. While working with this council the last two years, I can honestly say that this group has become more of a family to me. We are always there for each other, whether it be professionally or personally. Although 100% of our interactions are over Zoom, I still feel connected to all members. Oftentimes if I am having a bad day, joining a Zoom meeting with POQC will immediately make me feel better. Everyone on this team is so positive, understanding, and welcoming. They have accepted me with open arms and frequently show their appreciation.

It is very rewarding to be part of a group that has a shared goal and passion for improving patient care. With that kind of culture, our work doesn’t necessarily feel like work. One of the many things I love about POQC is being part of a community and being able to witness members relate to each other and form bonds about shared experiences. It is truly a unique companionship that brings many benefits, such as a great place to make connections as well as a support system to make any idea come to life.

As a future pharmacist, I have learned countless lessons from POQC that I will take with me into practice. The passion, drive, and positivity that everyone exudes daily really inspires me to display the same attitudes in my personal and professional life. They motivate me to always put the patient and caregiver first. Oftentimes, clinicians get very busy with hectic days and don’t prioritize the patient and caregiver or provide proper empathy for those interacting with this overwhelming diagnosis. When I am a pharmacist, I will always remind myself to take a step back and think of the patient and caregiver.

Another lesson that has become apparent throughout my time with POQC is that even if a patient or caregiver appears to “have it all together”, it doesn’t mean they do. They often feel as though they must be positive for themselves but also everyone else around them. I was specifically taught this lesson by one of the POQC members who confided in me to tell me that even though she always seems happy and outgoing, it is not always the case. Patients especially might not be completely honest with their providers because they do not want to feel like a burden. This has signaled to me that it is important to create a safe space for patients and caregivers by communicating that it is not a burden to hear how they are genuinely doing, and it will benefit their care if they are honest. In addition to the patient, I have learned how important it is to also focus efforts on the physical and mental health of the caregiver as they are just as much a part of the health care team, and often are relied on to absorb all the information being provided.

Since this council consists of patients and caregivers, they often have doctor appointments or don’t feel well and can’t make it to meetings. Our group is very understanding of this, flexible with meeting times, and emphasizes that family and health come first. This team makes it very clear that it is okay to miss any meeting for absolutely any reason. It is often said that if you are supposed to speak at a MOQC meeting and wake up that morning feeling nervous or unwell, it is completely acceptable to decline and there are no questions asked. This has taught me to demonstrate flexibility and accommodation with my coworkers.

I cannot emphasize enough how important it is to include patients and caregivers in quality improvement and care in general. The input of patients is what gives the work of MOQC meaning and purpose. Many of our initiatives would not be successful without the help that POQC members provide. They often help us to make sure that our patient-facing materials are patient-friendly, which is a huge task. They come up with ideas, problems, and initiatives that we didn’t know existed. They often share their own personal experiences with their journey that help us greatly.

For example, the financial navigation workgroup initially began their work by adding resources on our website. As their work progressed, some thought it would be more useful to educate physicians on financial burdens. This guided the creation of a breakout session in our most recent biannual meeting. We would have missed out on so many amazing opportunities, improvements, perspectives, and outcomes if we didn’t have the involvement of POQC.

As a future pharmacist, I am so lucky to have learned so many lessons from POQC that I will take with me into my career. I have learned to always put the patient’s feelings first, to truly ask patients how they are doing, focus on the caregiver, and to be as flexible as possible. While I have learned so much from POQC, the most important lesson is that patients and their caregivers absolutely need to be included in health care decisions, with no exceptions. They help to give our work perspective and make improvements that would not be possible without them. I am very hopeful for the future of POQC, as I know it will continue to grow and make a huge difference in the future of cancer care.