Introducing Jamie Holloway, Clinical Research Advocate

Science 37 welcomes patient advocate and scientist, Jamie Holloway, to our Clinical Research Advocacy team. We sat down with Jamie to learn more about her passion for advocacy, science, and empowerment.
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Tell us a little about your background:
I decided as a third grader that I wanted to be a scientist and I never looked back. I always loved math and science and problem solving. But before you picture me as a wild-haired, lab coat–clad mad scientist, you should also know that I love pretty things. Few things make me happier than a lovely pair of shoes or discovering the perfect shade of lipstick. My husband is a scientist, too, so of course our teenage daughter is an athlete and an artist. My heart melted a little when she recently proclaimed math as her favorite class because “it’s easy and it makes sense.” My boy is the adventurer, and thoroughly studies everything he decides to undertake, whether it’s computer programming, video editing, or parkour. We all expect he will be the brainiac on the American Ninja Warrior course the day he’s old enough to be eligible.

I had the privilege of staying home with those two after I finished my PhD on tumor biology in breast cancer at Georgetown University. I had wanted to do science that could make a difference in a patient’s life in the “near” future, so I chose a lab focusing on a very real clinical problem — the development of hormone independence in breast cancer.

When my youngest headed to kindergarten, I thought it was high time for my first grown up job. I was 35, after all. But instead of finding a job that fall, I found a lump. While everyone else was “celebrating” breast cancer awareness month, my family became all too aware of the disease and its effects on a family.

I was diagnosed with very aggressive triple negative breast cancer, and since it lacks anything for the targeted treatments to go after, I had harsh chemo before my surgery. After that, I got about the best news I could have hoped for — a “pathological complete response,” which translates to “they couldn’t find any cancer left.”

I had endured chemo well, with few of the terrible side effects that afflict so many, and I had a good result, too. Save a few reconstruction surgeries, I was done with my primary cancer treatment. (The emotional baggage was a little harder to ditch.)

I now take the experiences that I’ve had as a breast cancer patient and combine them with my scientific background to try to make an impact on the way research is done. I hope to help patients better understand the science that contributes to the treatment decisions they face.

What led you to advocacy?
In graduate school, I attended tumor board meetings, listening to a patient’s entire care team discuss particularly difficult or complicated cases. I was struck by how the science I was doing was contributing to the care of a patient. I began to see how patients who better understood the science of their disease could be more confident in their treatment decisions. I could also see how scientists should be listening to patients and their concerns to inform the kind of research questions they were asking in the lab. In the back of that small conference room in Lombardi Cancer Center, I began to design a career in advocacy, helping patients and researchers communicate better with each other. I wouldn’t say that being diagnosed with breast cancer should be a part of one’s career plan, but my diagnosis did give me the additional perspective of a patient, and has enabled me to more effectively bridge the gap between patients and researchers.

What do you do as an advocate? How do you do advocacy?
As an advocate, it’s my goal to meet all the people. I talk to researchers and clinicians about the things that are important to patients. I help patients understand the science that’s important to their diagnosis. And I introduce people, making friends and making connections is an important part of what I do.

Jamie Holloway (center), advocacy in action at the AACR conference.
Jamie Holloway (center), advocacy in action at the AACR conference.

What is one thing you are most proud of as a result of your advocacy?
I had the honor of helping Zeynep Madak-Erdogan, a researcher friend at my alma mater, the University of Illinois, start a cancer research advocacy group. It was such a pleasure to take part in their inaugural meetings which included the advocates and some of the researchers in the cancer community there. I was able to share lessons learned from the group that I’m a part of at Georgetown University: Georgetown Breast Cancer Advocates. A little over a year later, they have a robust group of advocates who are being trained and getting some great experience, and they even received a PCORI grant to provide additional funding for their group.

What does patient engagement mean to you and why?
An engaged patient is part of the process. That doesn’t mean that they can’t rely on a doctor for information, but it means that they are part of the conversation. It means if they have a question, they ask it, and if they don’t get a satisfactory answer, they dig deeper, ask elsewhere. I don’t think that an engaged patient needs to feel like they know everything, but I would submit that an engaged patient would know enough to feel confident that they’ve made the right treatment decisions for them as an individual, and that they have ensured that their needs are met, their concerns have been addressed.

What about patient-centricity?
I think the name kind of says it all. Centered around the patient. The tricky thing is, a treatment plan centered around me might not look the same as a treatment plan centered around you. In many cases, patient-centered care will need to be pretty specific — tailored to each individual. But there are some big picture issues that apply to most patients. Respect my time! Don’t make me come in if I don’t need to, and don’t make me wait if I do need to come in. Listen to my concerns, validate them, and help me address them. And remember that your priorities might not be the same as mine. Communication is so important.

What does science mean to you?
To me, science is problem solving. It all starts with the scientific method you (hopefully!) learned about in elementary school. Make an observation or notice a problem, then ask a question. Make an unbiased plan to help answer to your question. You can’t plan your process around the answer you hope to get. What makes science so great is that every answer, whether it’s the one you wanted or not, is informative to the process. And if you don’t get a complete answer, then you refine your question, refine your process, and start again.

What’s the connection from science to medicine for you?
I heard someone say it very eloquently last week, so I’m stealing his line — I never wanted to be in the clinic, but I wanted to arm the clinic. Science is the foundation of medicine. Understanding the basic science of disease and how it grows, works, dies — that’s how treatments start. Scientists figure out the intricacies of disease, figure out how to exploit the weaknesses, and from that potential treatments are born. Clinical research is an important continuum — as researchers investigate patient populations, they learn more about the origin, development, and progression of disease. Scientists can take what they learn from the patients to the lab, refine their questions and processes, and bring a potential treatment back to the patients.

What is the most important issue to you regarding the future of scientific research?
Studies need lots of patients, and all of the patients who will ultimately receive the treatment need to be included, in other words, clinical research is so dependent on accrual. Getting enough patients quickly is critical to getting good treatments to patients quickly. But having the right patients in a study is just as important as having enough. Having an ethnically diverse study population means that the outcome of the study will apply to all who have the disease. Also, excessive and unnecessary exclusion criteria in some studies means that the patients most likely to receive a treatment were never included in its development and validation, so doctors have no idea what will happen when they prescribe it.

If you could initiate clinical research into one thing what would it be and why?
Admittedly, it is a largely emotional response, but I would love to see more research on brain metastases. Regardless of where their original tumor was, patients with brain metastases have very few treatment options, and except in very rare cases, the available options only reduce symptoms temporarily. Patients with brain mets are routinely (and often needlessly) excluded from clinical trials, so they don’t have access to the most cutting-edge treatments. It is an area of great unmet need, to be sure.

How would you feel about being able to join a clinical trial and participate in research from your home?
Clinical research takes time. Whether it’s extra trips to the doctor for tests or procedures, trips to the pharmacy for more study drugs, or extra questions to answer about how the treatment makes me feel, all those things take up my precious time. Participating from my home means that even if there are a few extra steps, I can do them on my own time, and don’t have to spend time driving, money parking, and I don’t have to take off work or get someone to watch my kids. When someone can find a way to make participating in something important that much easier, it tells me that they are truly patient-centered.

Find Jamie on Twitter and her blog.

This story has been edited for length and clarity.

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