The healthcare system is not designed to serve patients. It may have started out that way, but it’s best we confront or current reality.

That’s not to say that the people working inside of this industry are bad. Not at all. Some of the best, most generous, and caring people I’ve ever met work in healthcare. Unfortunately, they, like the patients they serve, are merely inputs to a complex national healthcare system that’s evolved to serve itself and its ever-growing appetite for trillions of American dollars.

I don’t blame anyone for this. If you look at the history of how the system evolved, it makes a ton of sense that we’ve ended up here. And I’m encouraged by some of the emerging trends in the industry to pay for value, coordinate care and address the social determinants of health (SDOH). We’ll get better, but it’ll take time.

In the meantime, what will I do if I or one of my loved ones gets sick? Like really, chronically sick where we need tight coordination across teams of caregivers from many organizations right now?

The fact that ONC and CMS are driving patient access to data someday won’t help me secure a second opinion today. The important, but glacially slow move to value-based payment won’t ensure my doctors collaborate over the next month. And the various star-ratings systems won’t help me pick the right doctor right now. No one will come to our rescue. We’ll need to figure it out on our own.

That’s where today’s guest comes in. Grace Cordovano is a board-certified patient advocate. Grace, and the growing army of patient advocates like her, are available to help you navigate the healthcare system “in a manner that’s conscious of your health literacy and culture”. Grace specializes in Oncology and her clients are newly diagnosed cancer patients. She becomes their care partner and works with them from the “point of diagnosis through survivorship or end-of-life care planning”. She takes the time to understand their challenges and goals and connects them to the “information and the tools that they need to make educated empowered decisions about treatment and their healthcare trajectory”.

That includes acquiring medical records, assessing which physicians may be best for second opinions, identifying which facilities host clinical trials, and much more. None of these are easy tasks, and to be successful, you’ll need a lot of time and expertise. Two things the average patient lacks.

Patient advocates are directly hired and paid for by patients. And while no one needs additional healthcare expenditures, this puts the patient advocate completely in the patient’s corner. They’re likely to become your most trusted ally along your care journey.

In this interview, Grace helps us to understand why patient advocates are needed, how they add value, and how much work and expertise is really necessary to do this job effectively. Topics include:

  1. What is a board-certified patient advocate?
  2. What made you decide to become a patient advocate?
  3. Where can I find a patient advocate?
  4. Which patients are most likely to benefit from this service?
  5. Why aren’t health insurers and providers doing this already?
  6. What exactly does a patient advocate do?
  7. How do patient advocates interact with providers and insurers? And how are they received?
  8. Do patient advocates ever experience resistance from the healthcare system?
  9. Why is it so hard to acquire medical records? Do we really have a data blocking problem in healthcare?
  10. Do we need a wall of shame for healthcare organizations who refuse to share data or those who make it difficult or slow?
  11. What tools are absent from the market today that could help?
  12. What is Unblock Health and what will you be discussing at the Connected Healthcare Conference on October 18th?

Grace Cordovano

Grace Cordovano, PhD is an award-winning, board-certified cancer patient advocate and founder of Enlightening Results. Growing up first generation, Grace’s patient advocacy journey started as a teenager, navigating the diagnoses of family and friends who were immigrants, didn’t speak English, or have health insurance. As a college student, she was thrown into being a full-time carepartner when her mother was diagnosed with an aggressive breast cancer on her first mammogram. 

In honor of her mother’s diagnosis and survivorship, Grace completed her Master’s and PhD in biochemistry of metabolic disease at Albert Einstein College of Medicine, characterizing potential chemopreventive agents in preclinical models of breast, prostate, and lung cancers. Shortly before defending her thesis, Grace received her own diagnosis of advanced lymphoma. After 4 months of tests, biopsies, endless imaging, surgery, and being placed in isolation post-operatively for a possible case of tuberculosis, Grace was ruled a misdiagnosis and diagnosed with a fungal infection she had acquired on her honeymoon. Her life’s experiential learnings led her to fully commit to patient advocacy as a profession.

As a board-certified patient advocate, Grace strategically guides patients with empathy, ensuring they are armed with the most pertinent, easy to understand information and tools to make empowered decisions about their care. Frustrated by the severe challenges patients face, she is committed to being a patient experience enhancer and amplifying the patient and carepartner’s voice.

Grace is a champion for the use of digital tech and social media to bridge informational silos and fallout from poor interoperability, poor health literacy, and lack of coordination of care. She is a power patient networker and connector, encouraging patients and their loved ones to turn to peer health support so they never have to walk alone.

Grace is a national e-patient ambassador for palliative care in collaboration with the Coalition for Compassionate Care of California. As a member of the Society for Participatory Medicine, she is an evangelist for shared decision making and the advent of participatory medicine and care.  Grace is a member of Savvy Cooperative, a patient-owned cooperative elevating the patient voice.

Follow her on Twitter at @GraceCordovano

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