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Posts tagged ‘Minimally Disruptive Medicine’

What Improves My Healthcare Experience.

What would improve the healthcare experience for me, as a patient with multiple health conditions?  I’m glad you asked.  (You did actually ask, right?)  A few things would help move things forward.  Here’s a thought-purging because I happened to have coffee:

Billing processes that make sense.  For example, I received a refund for mail order pharmacy overpayment in the same week I received a collection notice for the same account.  I had overpaid because their receivables system wasn’t as fast as their billing system, which flagged my account for collections when in fact I was ahead of the game.  If the billing system was synced properly with the accounts receivable system, they would have known I was in the black, not in the red.  But thanks for sending all those letters telling me I wouldn’t receive any more insulin shipments unless I paid the (not due) balance.  Fuckers.  (Also, get paid for things that make sense.  A test to diagnose me with type 1 diabetes twenty-nine years after my type 1 diabetes diagnosis is ridiculous, but required by my insurance company.  What a waste of resources.  Spoiler alert:  I have type 1 diabetes.)

Everyone be on time.  Simple, right?  If my appointment is at 10 am, I show up no later than 9.45 am, usually 9.30 am.  I’m afraid of being late.  But the HCP showing up at 10:15, 10:30 … 11 am is fine because their schedule takes precedence over mine?  I understand being late from time to time, but a 10 am appointment should not linger well into lunch time.  I like lunch too much to miss it.

Make getting paid easier.  My doctors should be paid for what they do.  If they review my CGM data, there should be a billing code that pays them for that review.  If they (by the grace of some fancy god) are able to email me, they should be paid for sending that email.  Their medical expertise is hard-earned and should be properly appreciated.  To that same end, my insurance company should pay out (incentivize!) proactive care instead of reacting to chaos.  My parents should not have had to battle for more than three test strips per day for me when I was a kid.  Checking my blood sugar should be fully covered, as it’s an investment in keeping me healthy.  Pay to keep my body whole, don’t start paying once it starts falling apart.

Don’t let money drive.  Twice in the last three months, I’ve had to make appointments with new care providers and the very, very first question out of the receptionist’s mouth is, “What insurance do you have?”  This is immediately after, “Hello?”  I would guess that this is in effort to streamline the phone tree (and triage) process, but you don’t even know why I’m calling.  And you have no idea what I can and cannot pay for.  Asking if you’ll be paid before asking if I’m okay puts financial needs in the driver’s seat … yet another driver, with the patient tied up in the trunk.

Treat me where I am.  If I come into my GP’s office with an issue that applies to their primary care practice but they consider it a diabetes-related issue and they refer me back to my endo in order to receive care, that’s crap. Treat the patient where they are.  Ask about and then make the mental health referral in my endo’s office, please.  Don’t turn me away if I come to my PCP with a diabetes need.  Sometimes it’s difficult to get time off to go to the appointment, and having the issue not even addressed because it’s deemed out of scope makes it that much harder for me, as a patient, to coordinate care.

Integrate the shit out of things.  My A1C should be sent by my endo to my primary care doctor’s office.  My pregnancy file should be sent from the high risk maternal fetal medicine office that delivered Birdy to my “regular” OB/GYN here in Rhode Island.  (Why am I still tracking that information down, almost six years later?)  My dental records should be on file at my PCP’s office.  Any visit with a mental health professional should be documented and sent to my PCP and my endo.  I’m not asking my medical teams to start a softball team, but it would be good if my information flowed in a predictable and useful way.  Instead, I have this weird folding file of information and lab work and notes in my phone, creating a patchwork quilt of my medical information that’s a little threadbare.  It would be great if EMRs (or EHRs or EMFs) actually worked for me, and for my medical team.  Otherwise, they become another tool that keeps my medical team from making eye contact with me and I’m still dragging around that folding file.

Life with chronic illness has taught me that the medical system is gross and broken.  This isn’t a hard and fast fact (see also:  you are reading this on the Internet, therefore consume with grains of metaphorical salt) but anecdotal experiences eventually harden into truth.

And that truth is my life with diabetes.

Diabetes Research: My Evolution Toward a Patient Revolution.

I like Dr. Victor MontoriHe’s a Mayo Clinic diabetes doctor and researcher who is working for a patient revolution – versus healthcare corruption – and for treatments that fit patients properly.  He and I are part of a PCORI team looking at user-centered design and the development of patient decision aids, and I had the chance to meet with Dr. Montori in person at the PCORI meeting in DC last month. 

What I like most about Dr. Montori is that he doesn’t say what people want to hear, but he says what he feels needs to be heard.  I respect the lack of bowing to the status quo, and the desire to improve the system.  Today, for Diabetes Month [insert blue circle confetti here], Dr. Montori has graciously offered to share his perspectives on why the patient revolution is important, and how we are all a part of it.

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Diabetes research: my evolution toward a patient revolution

by Victor M. Montori, MD, KER Unit, Mayo Clinic

I can only speak of the picture I have had a chance to see directly since I started my career as an endocrinologist in 2000. I am referring to my perspective about diabetes. I worry my perspective is narrow and skewed, but it is what it is. So here it is, offered humbly in case it helps.

My training as endocrinologist focused on conducting research with my mentor, Dr. Steven A. Smith, research he had oriented toward discovering better ways of caring for diabetes in the community. He taught me about the different ways in which clinicians and communities could support people with diabetes, and how, in health care, specialists and generalists needed to work together. He saw the role of endocrinologists more as architects, designers of systems of care, rather than as artisans, designers of care programs for individual patients. He made me aware of the challenges poorly designed health care adds to the already complicated lives of patients. And he made me aware of the complicated lives of patients and how terrible clinicians would improve their standing by either directly firing patients or by chastising the noncompliant ones who would then leave the practice. These clinicians would then boast that they did not have noncompliant patients and had no trouble keeping them all under 7%. This to me exemplifies the corruption of healthcare.

I think there is a direct link between those early lessons and those I have learned as a researcher and clinician focused on diabetes in the last decade. My band of sisters and brothers, the Knowledge and Evaluation Research Unit or KER UNIT, works closely with a patient advisory group comprised of patients with diabetes who have met monthly since November 2004 to support researchers like us in our work. Firmly keeping us patient-centered has been their key contribution. The KER UNIT was formed on the basis on three principles: generosity, integrity, and patient-centeredness. These are lived principles and we constantly refer back to them to make tough decisions. They have served us well. As a result, for example, we take no funding from for profit corporations, funding that could stand as an alternative explanation – to scientific judgment – for how we have summarized evidence or presented it to patients and clinicians.

We focused our first efforts as a unit to understand how we know what we know, as this translated into what we told patients to do. In doing so we found that much of our dogma is based on unreliable evidence, that much of that evidence fails to tell us if patients will be better off with our interventions, and that it focuses on a mythical molecule, the HbA1c. HbA1c is the outcome of choice for all clinical trials, the metric of quality for most quality improvement projects, and the only grade on the gradebook on the desk of the endocrinologist-as-principal. And when we asked patients, HbA1c was as important as death as an outcome for diabetes research! The manipulation of patients and clinicians was complete.

With my colleagues at the KER UNIT, we then turned our attention to shared decision making and developed the first tool to help patients and clinicians decide together if the patient should take a statin to prevent heart attacks or which diabetes drug to choose. Those tools, found on trials to be effective, have remained freely available and are used at least 10,000 times per month, around the world. By bringing transparency to the consultation, patients and clinicians could find what is best for each patient, based on what is possible and effective and on what matters to patients.

In 2009, we started to develop an approach that seeks to advance the goals of patients while minimizing the healthcare footprint on their lives. This work involves recognizing the work of being patient, understanding the burden of treatment, and learning how healthcare could be delivered in a way that is careful with what it demands and kind with the precious capacity patients have to do this work and to do the more meaningful work of addressing life’s urgent demands while pursuing their hopes and dreams. We call this minimally disruptive medicine, and we believe it is going to transform medical care, particularly for patients living with chronic conditions like diabetes.

This is particularly important for patients with chronic conditions like type 1 diabetes. Patients with diabetes study, work, and grow families, develop careers and volunteer, plan schemes and pursue challenges. Diabetes sometimes gets in the way, but care of of diabetes – organized often to satisfy economic and business urgencies, almost always gets in the way. Think of the difficulties of getting stuff paid, approved, coordinated, or delivered, of getting medications refilled, getting records shared with other clinicians and with patients. Paper work, time work, worry work. Technologies are helping reduce the healthcare footprint of diabetes in people’s lives, just as an increase awareness of the human cost of hypoglycemia is helping nuance the care of patients with diabetes in hospitals and clinics. Hopefully the endocrinologist-as-principal judging the patient only on the basis of HbA1c levels is an endangered species we will not save. Only competent and compassionate medical partners and clinics, able to be careful and kind, need apply. Our team is quantifying the work of being a patient with diabetes and bringing to consultations tools to uncover why patients may struggle to achieve their own goals.

Our latest pursuit recognizes the limitations of only innovating within healthcare. We think we need to fundamentally change medicine and re-orient healthcare toward the care of patients. To achieve that we need to change the way health care is organized, paid for, delivered, and rewarded. Clinicians, my colleagues, recognize the need to recover medical care of the patient from the industrialization of health care, but they declare their impotence. Thus, I strongly believe it is time for a patient revolution.

Perhaps the next big civil rights movement, the patient revolution will claim that people cannot be left out, priced out, of the care they need. They will claim that people cannot be exposed to less healthcare than they need, or more healthcare than they want, and that health care must fit their context. They will claim that healthcare cannot start and stop at the hospital door, but rather should be complemented by policies that improve the health of the community and reduce the impact of factors that promote chronic illness such as pollution, violence, poverty, inequality, inequity, loneliness, homelessness, and poor nutrition. Through individual advocacy (not for a single disease or for a loved one alone) and collective action (not the walk, the run, the ride, or the bucket) we can bring change to make healthcare more about care for and about the patient. I invite you to mobilize your friends and family and to join the patient revolution.

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Thanks, Dr. Montori, for sharing your thoughts.  As patients and caregivers touched by diabetes, how can we be part of the revolution?  Patient voices and perspectives are not new.  We are the revolution.

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