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. Wenora Johnson is a three-time cancer survivor, patient and research advocate, and a member of the PQA Patient Advisory Council. The perspectives shared are those of the author.
Attending the Pharmacy Quality Alliance Annual Meeting in Baltimore was both an honor and an important reminder of why patient voices must remain central in conversations about healthcare quality, medication management, and outcomes. As a cancer survivor, Lynch Syndrome patient, caregiver, and patient advocate, I had the opportunity to participate on Thursday, May 14, in the General Session focused on Patient Perspectives on Refocusing the Medicare Star Ratings, where I shared lived experiences and perspectives on what truly matters to patients and caregivers navigating healthcare every day.
What stood out most to me throughout the meeting was the growing recognition that quality healthcare is about far more than clinical outcomes alone. While metrics, adherence rates, and medication safety remain critically important, the conversation is evolving toward something deeper: understanding whether healthcare is truly helping patients live better lives.
During the panel discussion, I reflected on both the strengths and gaps I have seen within the healthcare system. I shared how meaningful it can be when clinicians, pharmacists, and healthcare teams take time to ensure patients understand not only how to take medications safely, but why those medications matter. Clear communication, coordinated care, and compassionate support can dramatically improve confidence and trust.
At the same time, I spoke candidly about the challenges many patients continue to face, fragmented communication between providers, medication affordability, side effect management, confusing instructions, and the overwhelming burden of juggling appointments, treatments, and daily life while managing serious illness. Too often, patients are left trying to navigate complex systems at moments when they are already physically and emotionally exhausted.
One of the most meaningful discussions centered around what the pharmacy experience should ideally look like. From my perspective, the pharmacy counter should feel less like a transaction and more like an extension of the healthcare team. Pharmacists are often among the most accessible healthcare professionals patients encounter, and their role in education, safety, and trust-building is invaluable. Patients should feel comfortable asking questions, expressing concerns about costs or side effects, and admitting when they do not fully understand instructions, without fear of embarrassment or judgment.
I also appreciated the opportunity to discuss areas where healthcare quality measurement must continue to evolve. As someone who has lived through multiple cancer diagnoses and caregiving experiences, I believe we must broaden what we define as successful outcomes. Long-term survivorship, emotional well-being, quality of life, financial toxicity, caregiver burden, health literacy, and treatment burden all deserve greater attention within quality measurement programs. Patients are more than data points, and effective care must reflect the realities of daily living after diagnosis and treatment.
One particularly emotional moment for me was sharing a personal caregiving experience involving my late husband during his battle with pancreatic cancer. Even with written instructions, administering morphine felt terrifying because the fear of making a mistake or overdosing someone you love is very real. That experience reinforced for me how essential patient and caregiver education truly is. Education is not simply a “nice extra”, it is a patient safety issue. Patients and caregivers need clear, compassionate, understandable guidance to safely manage medications and care responsibilities at home.
Another major takeaway from the meeting was the importance of measuring what patients themselves value. Too often, healthcare systems measure processes while patients focus on questions like:
- Can I maintain my independence?
- Do I understand my treatment plan?
- Can I afford my medications?
- Does this treatment align with my goals and quality of life?
- Am I being heard and respected?
These are the conversations that help determine whether care is truly patient-centered.
As I concluded my time at the PQA Annual Meeting, I was also reminded how meaningful it is to begin this next chapter as a newly appointed member of the PQA Patient Advisory Council. This opportunity represents more than a title, it reflects a continued commitment to ensuring that patient voices remain embedded in conversations surrounding healthcare quality, medication management, safety, and outcomes.
I look forward to contributing both my lived experience as a cancer survivor and caregiver, as well as my work as a patient advocate, to help shape more patient-centered approaches to quality measurement and care delivery. Patients bring perspectives that data alone cannot capture, and I believe meaningful change happens when lived experience is treated as expertise alongside clinical and policy leadership.
I left Baltimore encouraged, energized, and hopeful about the future of patient-centered quality improvement. The conversations taking place within Pharmacy Quality Alliance are helping move healthcare toward a model that not only measures outcomes, but also values dignity, understanding, quality of life, and the human experience behind every patient journey.
Most importantly, as a first-time attendee, I left reminded that behind every measure, every medication, and every quality score is a human being simply trying to live the best life possible.