A Care Coordinated Journey: Breast Cancer & Technology-Enabled Care
By Elise Sweeney Anthony, ONC
Twitter: @ONC_HealthIT
October is a great month for so many reasons. Costume shopping with the kids, the beauty of autumn, and—hitting close to home for me as a breast cancer survivor—National Breast Cancer Awareness Month!
It is a time to raise awareness about breast cancer, share how early detection can save lives, and remind us all that breast cancer is not just a disease that threatens women. It is a time to spread awareness in support of all the current breast cancer fighters, those in survivorship, and those we lost before their time. It is also a time to highlight what is needed to continue to advance the fight against breast cancer…and that includes talking about how technology-enabled care can inform breast cancer treatment and research, and how it can help patients like me (and our families) manage our care.
Care Coordination Cannot Happen Without the Patient
I know how hard it can be to traverse through a cancer diagnosis and what could be multiple procedures, treatments, and surgeries. I also know that there is much that can be done to further support patients on their journey.
For me, my journey was eased by a care team that embraced health information technology and shared decision making. Case in point: the biopsy results that confirmed my cancer were available for me in my patient portal before I saw or spoke with my doctor. This gave me time to take it all in and to do some research on the type of cancer I appeared to have. It also gave me time to reach out to a friend who had been diagnosed with breast cancer years earlier. She helped me think through a list of questions to ask my care team at my upcoming appointment. I felt better prepared for my doctor’s appointment as a result. These important steps helped me process my diagnosis and empowered me to prepare for what was next. The fact that my care team supported my choice to receive my lab results in that way was invaluable.
A care team that includes the patient as an active part of the team not only fosters trust with the patient but also creates a welcoming environment for them to share their preferences and to feel comfortable engaging in the decision-making process. I saw this firsthand and it truly contributed to my care experience.
This is also a principle that you see throughout ONC’s work. ONC policies are patient-centric, patient access-enabled, and committed to clinicians having what they need to support care. For example, the Cures Act Final Rule supports access by patients to their lab results without delay (with certain HIPAA-aligned exceptions for things like protecting against harm).
As a result of the Cures Act Final Rule, patients can choose to open their portal, click on the lab results tab, and access their lab results in the comfort of their home. Other patients may decide that they prefer to wait and hear their results from their provider during their next office visit—and that’s okay too. The Cures Act Final Rule supports patients’ deciding for themselves how they would like to receive that data. At the same time, the rule also supports the patient-provider relationship. These two concepts are not mutually exclusive.
Technological Tools in the Toolbox
Care tools are not just stethoscopes and blood pressure cuffs. Using innovations in health IT as tools for care is more than the future of health care…it is the now of health care. Thanks to a vigilant gynecologist who sent me for a mammogram, I am now cancer-free. In my case, there was no lump to feel, redness to observe, or pain to signal that something was wrong. My cancer could only be seen through the technological marvel of a mammogram. It was my gynecologist, radiologists, and the mammogram that sounded the alarm in the middle of my 39th year. The alarm led to a confirming biopsy and a personalized care plan that included a risk-reducing double mastectomy and reconstruction. All by the time I turned 41.
I am thankful. Without my care team and that tech-supported mammogram, it could have been years before my cancer was found. And, not only did the mammogram identify the cancer but it visually showed it in a way that I—a patient—could see and understand. My radiology team then took the extra step to walk me through the images and explain why it was of concern.
Even my second opinion was technology-enabled. I did not have to repeat my biopsy or my mammogram. A different provider in a different care system reviewed the initial imaging studies to analyze my case. Money saved. Time saved. Patient supported.
Let’s all give a hand clap for patient-centered care!
Awareness & Action
Saying that I am a breast cancer survivor is a humbling and thankful experience. I know that there is so much more to be done to increase the number of others who can say the same. Access to care, care coordination that includes the patient, early detection, identifying and addressing health disparities that hinder survival rates for people of color, innovations in care, technology that has equity-by-design as a core principle, and patient empowerment are just some of the critical areas that we must tackle in the fight against breast cancer.
It is a long list. Yes. There is much to be done. Yes. Health IT is a tool to help make it all a reality. Thankfully.
This is a month to advance awareness and spark vigilance across the other 11 months of the year. It is also about taking action. So consider monthly self-checks, get screened (check out this link if you are looking for a screening program near you), and spread the word. It can be lifesaving. Take it from me.
This article was originally published on the Health IT Buzz and is syndicated here with permission.
