What happens when patients and healthcare professionals are experiencing the same problem, but seeing very different parts of it?
In my conversation with Brooke Boring, she described something that came up when the Hematology Oncology Pharmacy Association, better known as HOPA, brought patient advocacy organizations and professional organizations together around chemotherapy drug shortages.
Some patient organizations knew about the shortages from the news but weren’t hearing the same concerns directly from their communities. Meanwhile, pharmacists and other healthcare professionals were working through difficult decisions and finding ways to keep care moving.
Brooke’s explanation was that healthcare teams were doing so much work behind the scenes that patients didn’t necessarily see the disruption.
That doesn’t make either perspective wrong. It shows why we need both. A patient can explain what it feels like to receive care. A pharmacist can explain what it took to make that care possible. Putting those experiences together gives us a fuller picture of what needs to change.
The person on your care team you may not know
Brooke is HOPA’s associate director of health policy and advocacy. Her work includes legislative advocacy, patient education, and bringing the patient perspective into the organization’s work.
I serve on HOPA’s patient advisory panel, so I’ve had the opportunity to see some of that work firsthand.
But when I was going through treatment, I didn’t even know I had an oncology pharmacist.
That’s why I wanted Brooke to explain what these professionals actually do.
She described work that goes well beyond preparing or checking medications. Depending on the care setting, oncology pharmacists may help patients understand treatment, address side effects, and work through barriers to getting medications. That can include calls to insurers or identifying patient assistance options.
Some of that happens directly with patients. Some happens where we never see it.
As Brooke pointed out, patients may not know about an access problem because someone has already been working to resolve it.
During our conversation, I encouraged patients and caregivers to ask about the oncology pharmacist on their care team. Get to know who they are and how to reach them.
When you’re trying to understand treatment or explain what you’re experiencing, it helps to know who you can ask. You shouldn’t have to figure out every part of the system before you can get help navigating it.
Your experience belongs in the conversation
I ask every guest how they define advocacy. Brooke’s answer was broad: arguing for a cause.
That might mean meeting with a member of Congress. It might mean sending a message, making a call, or helping someone understand an issue you care about.
“I think there’s a place for everyone in advocacy,” she said.
That matters because policy can feel like something other people do. People with the right credentials, the right vocabulary, or the confidence to walk into a congressional office.
But Brooke described how the atmosphere in a meeting can change when a patient introduces themselves. Staff members turn toward that person and ask about their experience.
The pharmacists bring their own stories, too. They can explain why they entered oncology, what they do every day, and the barriers they encounter while helping patients.
Those contributions aren’t interchangeable. They give different meaning to the same issue.
A patient might explain what a delay meant for their family. A pharmacist might explain the steps involved in trying to resolve it. Together, they help connect a policy discussion to what is happening in someone’s life.
You don’t have to know everything about legislation to explain what happened to you. And you don’t have to tell every part of your story to make a useful contribution.
Patient involvement shouldn’t stop at the invitation
HOPA’s work also offers something for professional associations, healthcare organizations, and industry organizations to consider.
Brooke described involving patients in the development of education materials, asking what resources they need, and including patient perspectives in conference sessions alongside scientific and operational discussions.
There’s a difference between asking someone to review a resource and asking what resource would have helped them in the first place. Both can be useful, but the second question creates room for patients to influence the direction of the work.
For organizations, that raises some practical questions:
Are patients involved early enough to shape the priorities?
Are you asking what they need, or only asking them to respond to what you’ve already developed?
Can they participate in ways that account for treatment, work, caregiving, and travel limitations?
Do they know what happened as a result of their contribution?
Brooke described both in-person and virtual Hill Days. Having different ways to participate matters. Someone may have an important perspective without being able to travel to Washington.
The same principle applies beyond legislative advocacy. If an organization wants to hear from more people, it needs to consider what makes participation possible.
Patient involvement is more useful when it becomes part of how the work happens, not just one item on the agenda.
A shared message doesn’t require identical experiences
The drug shortage discussion brought that point into focus.
Brooke described congressional staff hearing different information from different organizations and struggling to understand what action would be most useful. HOPA brought organizations together to work toward a shared understanding of the problems and potential policy responses.
That required listening across perspectives, including perspectives that didn’t initially seem to match.
For patients, caregivers, pharmacists, and other healthcare professionals, there’s something worth keeping in mind here: not seeing a problem yourself doesn’t mean it isn’t happening.
And seeing a problem from one position doesn’t mean you understand every consequence.
That’s a reason to work together, not a reason to decide whose experience counts more.
When organizations build coalitions, the goal shouldn’t be to make everyone’s story sound the same. It should be to understand how those stories connect and what they tell us about the changes people need.
You can start smaller than you think
Brooke was also honest about the pace of policy work. Advocacy doesn’t necessarily produce a bill that passes a few weeks later.
She described other signs of progress: staff members remembering previous meetings, understanding the role of oncology pharmacists, and more patients and professionals participating.
Those relationships don’t replace policy change. They help build the understanding needed to pursue it.
For someone wondering where to begin, Brooke pointed to letter-writing campaigns that allow people to add their experience to a prepared message. A congressional meeting isn’t the only entry point.
When I asked what she would change with a magic wand, her answer centered on access: people being able to receive treatment regardless of where they live or their financial circumstances.
That connects the policy work back to the patient. What does an available treatment mean if someone can’t actually get it?
Start with a question you need answered, a barrier you’ve experienced, or something you wish the people making decisions understood. You don’t have to represent everyone. You can contribute what you know and listen to what others bring.
Connect with Brooke and HOPA
Interested in getting involved in HOPA’s advocacy work? Email HOPA’s advocacy team advocacy@hoparx.org to ask about opportunities such as Hill Days or the patient advisory panel.
To connect with Brooke about this conversation or her work, email Brooke Boring bboring@hoparx.org.
Watch my full conversation with Brooke in the video embedded in this post.
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Who else should be part of this conversation? Leave a comment or reply with a suggestion for a future guest and what you think we could learn from them.
