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.
Thank you for your story Ms. Cordovano. Your article has already drawn the attention of a number of others who have been advocates in this space for years, perhaps as long as you. Thank you for all your work.
So many of these discussions fall into two thematic categories:
1. Look how articulate and sophisticated we are in describing the problems, aren’t we smart/enlightened/exemplary humans?
2. Let’s do X! Aren’t we smart/enlightened/exemplary humans? (No practical means, methods, resources, measures, metrics offered, indicated.)
I know some of the folks who’ve posted here better than others. Some have developed, implemented, measured, shared work that has moved some small piece an inch or two.
What we all have in common is the belief that posting to threads like this matter. It doesn’t unless it shifts to a plan that includes objectives, measurement, metrics, and timelines towards a defined “better”. As others have deconstructed one prior poster or another, I could also deconstruct one or more of the arguments. For example, the proposition that the government hasn’t facilitated uniform data Standards is partially false. A substantial fraction of the truth of that statement is a result of successful lobbying, project undermining, obfuscation, and etc. by the major vendors for which they’ve gotten a walk and achieved systematic reduction in oversight and enforcement. No government action in part results from its benefit to key stakeholders, including the major vendors thus protected from competition. The two channels are hardly independent.
All that is to demonstrate that we can go on all day on theme 1 or 2 as we have for 20+ years.
My rhetorical question is this: On what basis can we reasonably assume vendors would act any different than they are acting? Any enterprise is going to work very hard to persist the sale-ability of their product “as is” for as long as they can. I grew up in metro-Detroit in the 70s. The then-Big 3 convinced us that seatbelts were too expensive, crash-save cars were impossible, lower emissions too hard. It took “some other actors” to disrupt that.
Have a look at HITECH 2009 which included by reference as law ASTM 2147 with its very (VERY) modest requirements for audit functions for EHR systems that are absurdly (or worse) “light”. Yet no entity enforces that law. Is this an accident? Is the non-enforcement a decision made in the absence of any input from the vendor community? Unlikely. Read the published settlements for vendor cheating on “Certification”, which resulted not in a tighter regime for “Meaningful Use’s” even more nanoscale requirements than 2147. It resulted in (cue the laugh track here)”self-attestation”.
In the meantime we collectively ignore that the historical guardians of patient interest have been systematically taken off line. FDA oversight has been eliminated, then forbidden. Consumer protection arm of FTC has to cooperate with ONC (which has no mission, mandate, or enforcement power, best seen as a thematic category 1 enterprise as above). Law enforcement? Some time back I calculated the fractional percent of anti-fraud spending compared to Federal healthcare spending. As of 2018 or so, it was about 0.2%, and their return on investment always meets or exceeds 3 to 1. It is amazing what they can accomplish with throttled funding. Why doesn’t that spending go up?
The collective efforts and minds on this thread so far could write on and on for weeks, months, years on the attributes of “bad”. What we all overlook is that in the midst of all this, as we point only to bad, those who thrive from badness win. They win because we do nothing to swing the spotlight from the bad towards those examples, those enterprises who have already demonstrated success. Some personal favorites: The Anesthesiology profession transformed itself in the late 90s from high-risk, high error, high malpractice rates to successful normalization of data modeling based on critical attributes of care. In the years following errors, harms and medmal costs fell. There’s an HIV clinic in Birmingham Alabama that, by also normalizing their data models long ago, has achieved extraordinary success and continued to build on it. Their HIV positive population is now indistinguishable from age/risk matched non-HIV patients. Let’s package their secret sauce for success.
Themes 1 and 2 above point to a funny metaphor I recently heard.
“Why, in the fish markets, are there usually no lids on the crab containers? Because if one crab makes progress, the others promptly pull it back down”. Let’s dedicate ourselves to quit being crabs.
There is a small group I know of that is attempting to wean itself from celebrating their ability to describe bad and shift to work on practical measurable, real patient benefit projects no matter how small the achievable scale. No doubt there are other such groups. The success stories I know of are greatly facilitated by data model normalization and they did not wait for the government to do anything. They saw the necessity and the value and did it as a tool to facilitate “better” not an objective for its own sake.
Our brethren in Anesthesiology demonstrated the government isn’t required to do that. The UAlabama Birmingham 1812 Clinic continuously demonstrates the government isn’t required.
I have no doubt that our little “action, not noise” group is one of many who don’t bother with complaints any more or with “Let’s do X” declarations with zero “How”. If you happen to be on one of those islands, or looking for such a community of problem-solvers with actual measurable achievements in patient benefit, consider dropping me a note at R.Gelzer@TrustworthyEHR.com. Let’s connect on shifting the US narrative from “Isn’t this awful” to “Let’s support, join, replicate and expand successes that already exist.” The government can’t help, its too compromised, until we collectively drag them away from perverse incentives for inaction with, “…and here’s how it is already being done, despite all those who say it can’t be done”.
Advocacy is OK and necessary to mitigate harms near-term.
Solutions are required and, absent a “how”, no matter how good it sounds, it isn’t a solution.
Let’s unite alongside those who have a proven how and make that our home community.
Thanks for such a great and right on spot article, Grace!
Priority #1 = access to my health data.
Priority #2 = my privacy.
And *I* decide the level of privacy I want. Not software vendors. Not hospitals.
Judy: the day your child is seriously sick and you don’t have access to data, you will understand and be sorry.
Thank you Grace for calling out the evil among us. Your opening sentences say it all: patients are powerless in the face of organized lobbies with profit as their first and foremost goal. To profit from people at their most vulnerable.
What most people and unfortunately even most patient advocates don’t realize is that in our wasteful money-focused healthcare system, even the lobby that claims to represent patients, CARIN Alliance, is working hard to block patient and physician control over health records. They’re doing it for the same reason as Faulkner and her customers: the profit to be made from control of the patient data and the work product of the licensed clinicians. The CARIN lobby, like the EHR lobby, and the hospital lobby, want to make sure that they are paid to “protect” the patients and the doctor-patient transactions because neither patients nor the physicians patients choose can be trusted to control our own interactions. We need very expensive gatekeepers in the form of hospitals and consumer app platforms – and they *should* be mandated by law.
The EHR lobby and the CARIN platform lobby have many things in common. They both organize in secret as lobbies and then engage in public relations to sell their “code of conduct” and their “best practices” to regulators and lawmakers. They both then seek to be mandated by government as middlemen in the transactions among doctors and between patients and doctors. Within HIPAA (hospitals) or outside HIPAA jurisdiction (PHRs and consumer app platforms), both kinds of data brokers want government to mandate that health records that derive from the physician-patient relationship MUST go through a data broker that can see and profit from the data.
Neither HIPAA nor any other law requires the physician-patient relationship, and the health records that result from medical practice, to be mediated by an intermediary that can access and profit from the data. Before computers, the health records intermediaries in the practice of medicine were US Postal Service and Fax. These intermediaries did not have access and could not monetize the immense value of the medical record data. The USPS is not allowed to open the mail and analog Faxes could not be profitably stored and repurposed by AT&T even if it were allowed by law.
But once the physician-patient relationship is digitized and interfaces called APIs are introduced, the ability to profit based on the contents of the envelope or fax line becomes virtually unlimited. In 2020, computers, storage, and networking are effectively free relative to the value of the health records for machine learning, artificial intelligence, analytics, health insurance, and a long list of ways to profit by steering or locking-in patients and physicians into various “networks”.
As Grace points out, patients do not have a lobby. Our physicians (and our regulators) have been manipulated over decades of “managed care” to create a vast bureaucracy of middlemen where administrators have grown 3,200% over a time-period where physician numbers have grown only 150%. That’s about 25X the rate of growth of middlemen and managers over actual producers. (I don’t mean to exclude nurses, and PAs, and other clinicians as actual producers. All clinicians are are valuable and teams that operate outside of “managed care” and vastly consolidated hospital networks do not contribute to the administrative bloat that has US wasting $1Trillion / year.)
It’s time for patients as well as clinicians to organize to take back medicine. Only then will we have a lobby of our own.
Good for you Grace! Epic has been a premier info blocker for their entire existence. Judy’s answer to interoperability has been “everybody should buy all Epic and everything will work just fine”. There is no question that Epic has been good for Wisconsin’s economy, but that’s not the point. Saying that you can take your Epic data anywhere is not interoperability, and Tommy T knows better.
Keep up the good work!
Wow, Grace. Powerfully said. Thank you. Good luck in your participation next week at the ONC National Meeting.