By GRACE CORDOVANO PhD, BCPA

Being a patient or a carepartner can be a lonely, powerless place.

There’s no high powered legal or lobbying team to help support you in your or your loved one’s health care journey. There’s no PR team at your beck and call. There’s no advisory board, no executive committee, no assistants, no chatbots or AI-powered technology coming to the rescue. There’s no funding or a company sponsoring your efforts.

There’s no course in how to be a professional patient or carepartner.

There’s no one there in the stillness and dark of the night, when you are in the quiet of your thoughts, the privacy of your personal space, where there are fleeting moments that you don’t have to be strong and courageous. There is no one there to console you, support you as you lay there willing to make a deal with the devil for the slightest glimmer of hope, the slightest bit of clarity, or slightest bit of peace.

As a the carepartner to a loved one who is sick or disabled, many wouldn’t second guess charging head first through a thousand wielded swords if it meant a hope or a cure.

As an advocate, the majority of the work you do is self-created, self-supported, and unpaid. A calling. An undeniable, magnetic force that pulls you in because you cannot turn a blind eye no matter how hard you try. Because you cannot bear witness to human suffering and not do anything. Because you’ve been there and you can relate to another’s pain, grief, and sense of hopelessness and it is unacceptable to not help ease the heaviness of another’s burden.

As an advocate, I know I am not alone when I wonder if my advocacy work is worth it. Does it all make a difference? What did over 20 years of advocacy work improve? Are all these hours of work into the depths of the night worth it? Is the constant mental, emotional, and physical effort of being perpetually on high alert going to bring change? Do the words spoken from the podium, the panels, keynotes, workshops, fireside chats, and the discussions that ensue after handing in my lavaliere or hand held microphone cause actionable change? Does anyone listen to the podcasts and interviews and change their business strategies? Do the business cards and LinkedIn connections exchanged matter? Do the thousands of hours I’ve spent carefully and thoughtfully placing words on paper in articles and blog posts to capture the patient and carepartner voice and perspective make a difference? Does the time spent dedicated to continuing conversations across 3 social media platforms matter? Was all the time I’ve spent away from my family, my children, on the road, traveling to conferences (often at my own expense) to amplify the patient and carepartner voice worth it? Are missing family occasions, children’s games, school events, outings with friends, as well as putting one’s marriage, self-care, one’s physical, mental, emotional, and spiritual being at risk worth it?

After over 20 years of advocacy work, when I close my eyes and reflect, I cannot unsee and unhear what I have seen:

• The people who have died horrible deaths because of cancer, with not a spot of dignity left.
• The parents who fought tirelessly to find hope of a cure or the gift of more time with their dying child.
• The people who have watched as their parents or grandparents died, sometimes slowly, unfathomable deaths, from their heart failure, dementia, cancer, diabetes, and other comorbidities.
• The people who struggle with their own cancer diagnosis while caring for their aging, sick parents, and their also disabled and medically complex children.
• The people who are disabled, who have been denied the critical care they need, the medical equipment and devices, and the standard of care treatments prescribed by their doctors, because insurance companies deemed them not medically necessary. Or worse, being denied their actual Medicaid.
• The people living with chronic illnesses who are denied their life-saving treatments by insurance companies daily, forced to see regressions, relapses, painful, sometimes irreversible progressions of their diseases.

The tears stream down my face as I recall the hundreds, thousands, of pleas I have been faced with over the last 20 years. Pleas, stories, cries for help that break one’s soul and leave you gutted.

There is a common denominator here. These people could not get access to the information they needed for the next step in their, or their loved one’s, care. Information they needed to:

· schedule a second or third opinion appointment

· to organize a tumor board

· to consider clinical trials

· to ask the right questions

· to pick the right doctor or hospital

· to fight an insurance denial

· to do a peer to peer and expedite care needed themselves

· to make an informed decision about an upcoming surgery or procedure

· to prevent a medical error from happening

· to fight an exorbitant medical bill

· to understand their diagnosis and treatment enough to know it wasn’t too early for palliative care

· to know that it was time for hospice

This is what information blocking looks like boots on the ground.

These are the realities people face when they are living with life-altering, life-limiting, absolutely earth-shattering diagnoses.

While patients and their loved ones can’t get the information they need to make educated, empowered decisions about their care, even while actively dying, hospitals, EHR vendors like Epic, as well as MANY other entities, have ludicrously shared and sold the same patient information for commercial purposes, to “improve hospital operations”, for “re$earch”, leveraging the legal loopholes of HIPAA, stating all is legal, this is business as usual. Without needing informed, explicit patient consent. Without any effort dedicated to patient education, public awareness, and transparency under the guise of “Nothing to see here”.

As patients and carepartners, WE WILL NOT STAND FOR THIS A MOMENT LONGER.

Thank you Ms. Judy Faulkner, CEO of EPIC, for your recent letter urging some of the biggest hospital CEO’s and presidents to oppose the proposed rules to improve interoperability and grant patients access to their information. You have made it crystal clear that you are not aligned with the real-world unmet needs and the barriers patient and carepartners face daily. Thank you for illustrating what paternalism looks like in 2020.

Thank you, Mr. Tommy Thompson, former governor of Wisconsin, for your guest column on why the proposed health IT rules would be a detriment to EPIC and Wisconsin’s economy. You have made it crystal clear that the business priorities of Wisconsin are of a greater importance than legal rights and the sanctity and dignity of the lives of all the patients of this great country of the United States of America.

Thank you for helping me refocus. Thank you for helping me answer the questions and address the self-imposed imposter syndrome that can momentarily cloud one’s perception. The answer is: IT IS ALL WORTH IT.

I am more laser-focused than ever before, more confident than ever that patients, carepartners, advocates, those in authentic support of first doing NO HARM, and those in support of partnering with patients and carepartners MUST to come together.

I want all patients and carepartners to know these truths: No one is coming to save us. Together, we can save ourselves and OUR healthcare as we know it.

The time is now to #UnblockHealth. I’m ready to blow the doors off this or at least die trying.

Respectfully Yours in Unblocking Health,

Grace Cordovano, PhD, BCPA

Grace Cordovano, PhD, BCPA is a board-certified patient advocate specializing in the oncology space, a patient experience enhancer, and information unblocker.