Major life update: From patient to patient-researcher

Dear friends – I need to come clean.

Many of you subscribed to receive blog updates from me starting in the late 2000s. However, behind the scenes I have undergone a major transformation and I am ready to transition this blog, this narrative, to what I am up to today. I hope you will stay with me.

Today, I am still that same person—the punk rock drummer turned brain cancer patient—but now I work for an academic medical center on a research project called OpenNotes. My C/V is a timeline and testament to how much my world has evolved over the last 11 years.

By the end of 2018, I was a co-principal investigator submitting a final report to a major funding organization and formalizing an official research mentorship with a Harvard Medical School professor.

Over that 10-year span, I led communications for a palliative care advocacy organization, was the subject of a documentary film on health data transparency, became a Stanford Medicine X e-Patient Scholar and a TEDMED Frontline Scholar, began working with the OpenNotes research team at the Beth Israel Deaconess Medical Center/Harvard Medical School, and launched and co-led a palliative/neuro-oncology research network. I’ve been invited to present to national audiences as a keynote speaker, panelist, and at academic grand rounds, and today I talk regularly on how healthcare professionals and patients are connecting through digital tools and working together as partners in research.

How did I get from patient to patient-researcher? It did not happen overnight.

It started with communications.

My formal background is in digital communications. One of my favorite activities is to determine how to transform complicated topics into easy-to-understand concepts through words, graphics and charts. Throughout my cancer treatment I honed this skill, first by starting this blog to communicate my experiences to a lay audience of family and friends, and later through the creation of videos and memes which I disseminated through social media. After my treatment ended, I was inspired to refine and disseminate what I learned from this passion project and bring my skills to “the real world” of health care.

I began working in healthcare.

For three years I served as Director of Communications for a major non-profit organization where I was exposed to the philosophy and practice of palliative care. From a communications perspective I learned the messaging of palliative care, and also deeply understood how a discipline so closely aligned with hospice could seem confusing or scary to patients and families.

I moved my career to academic medicine.

Today I work on OpenNotes at Beth Israel Deaconess Medical Center. OpenNotes is a national movement founded in research which urges doctors and other healthcare professionals to share the clinical notes they write with patients and their care partners. More than 200 health systems have joined this movement, sharing clinical notes with over 40 million patients through their existing, secure, online patient portals. My role at OpenNotes is multi-faceted: I work on our communications strategy, travel the country disseminating research findings, and established and lead a learning network representing over 60 health organizations.

And at the same time, I took a risk and applied for a grant.

Outside of OpenNotes, I was funded by the Patient-Centered Outcomes Research Institute (PCORI) to establish and lead a first-of-its-kind national palliative/neuro-oncology research network—the Brain Cancer Quality of Life Collaborative. Despite high palliative care needs and typically incurable diagnoses with no new treatments over the last 40 years, brain cancer patients are not routinely referred for early palliative care. There is an evidence gap for neuro-oncology palliative care models, and few strong networks of stakeholders and health systems needed to conduct trials for this disease. The mission of the Brain Cancer Quality of Life Collaborative is to engage diverse stakeholders (including patients and care partners) in the prioritization, design, and conduct of research.

Why did I take a big risk and start a research network with absolutely no background in research? I was motivated to start the project based on my personal experience as a member of the brain tumor community--because of knowing ALL OF YOU. As treatments failed, many of my friends in the community were referred to hospice just days before death, or found themselves living their final days hooked up to machines in hospitals. And for those living with active brain cancer, like me, few of us have had advance care planning conversations with our medical team. There is still so much work to do with this network, but earlier this year, at the urging of many, National Brain Tumor Society joined the Patient Quality of Life Coalition to support the Palliative Care & Hospice Education & Training Act (PCHETA) HR 647, as part of our annual advocacy agenda in Washington, D.C.

The future of medicine is about transparency and trust between clinicians and patients.

During the last two years with OpenNotes I have had the unique opportunity to observe how the tenets of palliative care overlap with research that shows how transparency grows trust between doctors and patients. OpenNotes and palliative care both focus on increasing communication between clinicians and patients, so that patients and their care partners have the information they need to make informed decisions about their health care.

However, OpenNotes represents a major culture change in medicine. Some clinicians treating those with serious illness express anxiety regarding how patients might react when reading notes. Time and again, evidence show only a small proportion of patients report feeling anxious after reading a note—rather, it is the clinicians caring for those patients who greatly overestimate that anxiety. I see this as unfortunate because often patients with late-stage disease are observed as either having unrealistic expectations or being overly hopeful they will achieve full recovery. Prognostic discordance is common among seriously ill patients and their doctors.

Patient leaders, researchers, innovators and designers are on the rise. Are you one of us?

Over these last 11 years, opportunities for patient advocates have grown exponentially. Today, patients are shaping medical education, being given more decision-making power in working groups and leadership councils, defining meaningful research priorities, and even leading their own research initiatives. There is no existing road map or academic plan to become this kind of leader. However, I am traveling this road now.

What are you working on?

I am amazed every day about what patients and care partners are doing to create new innovations in their own care. Whether that be figuring out a new way of remembering to take medications, or reading the latest medical journal article to learn about promising clinical trials, in this day and age we have access to more resources and information than ever before.

Please tell me what you are up to in the comments. I miss you! I want to hear from you. There is no one right way to respond to a cancer diagnosis. I chose the path of curiosity, volunteerism, advocacy, and now a career in healthcare. As I approach my 40th birthday, the next step in my journey is to evolve as a leader and learn how I can even better prepare for the opportunities heading my way.

Please stick with me, my friends.