Imagine solving wicked problems of patient matching, consent, and a patient-centered longitudinal health record while also enabling a world of new healthcare services for patients and physicians to use. The long-awaited Notice of Proposed Rulemaking (NPRM) on information blocking from the Office of the National Coordinator for Health Information Technology (ONC) promises nothing less.
Having data automatically follow the patient is a laudable goal but difficult for reasons of privacy, security, and institutional workflow. The privacy issues are clear if you use surveillance as the mechanism to follow the patient. Do patients know they’re under surveillance? By whom? Is there one surveillance agency or are there dozens in real-world practice? Can a patient choose who does the surveillance and which health encounters, including behavioral health, social relationships, location, and finance are excluded from the surveillance?
The security issues are pretty obvious if one uses the National Institutes of Standards and Technology (NIST) definition of security versus privacy: Security breaches, as opposed to privacy breaches, are unintentional — typically the result of hacks or bugs in the system. Institutional workflow issues also pose a major difficulty due to the risk of taking responsibility for information coming into a practice from uncontrolled sources. Whose job is it to validate incoming information and potentially alter the workflow? Can this step be automated with acceptable risk?
It’s not hard to see how surveillance as the basis for health information sharing would be contentious and risk the trust that’s fundamental to both individual and public health. Nowhere is this more apparent than in the various legislative efforts currently underway to expand HIPAA to include behavioral health and social determinants of health, preempt state privacy laws, grant data brokers HIPAA Covered Entity status, and limit transparency of how personal data is privately used for “predictive analytics”, machine learning, and artificial intelligence.
One of Entrepreneur Magazine’s ’50 Most Daring Entrepreneurs of 2018,” Jen Horonjeff, talks about the unique business model behind her company, Savvy Cooperative. Called ‘the match.com of patient insights’ Savvy matches patients to healthcare companies for the purpose of providing real, consumer input on their products and services. How does it work? How did it become a TRUE co-op? (Yep, it’s owned by the patients!) Listen it to learn more.
Filmed at HIMSS 2019 in Orlando, Florida, February 2019
Jessica DaMassa is the host of the WTF Health show & stars in Health in 2 Point 00 with Matthew Holt.
Get a glimpse of the future of healthcare by meeting the people who are going to change it. Find more WTF Health interviews here or check out www.wtf.health.
We all know “that patient” – the one we may dismissively label “noncompliant.”
The person with diabetes whose HA1C is consistently above normal limits – the one who swears, when confronted with the numbers (yet again) he’ll start eating right and using his insulin as prescribed.
And yet, month after month, the lab work tells a different story. We watch in helpless frustration as patients like these spiral downward, developing complication after complication.
I thought about “that patient” as I read a recent Wall Street Journal article describing Dr. Judith Hibbard’s Patient Activation Measure (PAM), which she and her colleagues at the University of Oregon developed some years ago.
First, let me say I greatly admire the research and work of Dr. Hibbard and her team; I believe that the PAM is a wonderful tool and a step forward in better understanding patients.
While the article, and Dr. Hibbard, argue that the use of the tool can better target the needs of patients – and I agree – I can’t help but worry that the entire premise that patients need to be “activated” misses a point.
Patients are people before they are patients.
We know that when people are sick, they are still part of their broader world of family, friends and finances. We also know that their social, spiritual and psychological selves are every bit as important, and as important to their “cure” as their activation as a patient.
I suspect that Dr. Hibbard would agree with me and even argue that the PAM reflects all of these factors.
PAM is accurately diagnosing the end state – how all these factors impact the patient and the patient’s ability to be involved in his or her own care.
I worry, however, that the PAM may be oversold by healthcare administrators who put it in place as a way of trying to address all the factors that affect patient activation.
Throughout the world, companies are embracing mobile devices to set customer expectations, enlist them in satisfying their own needs, and get workers to adhere to best practices. An effort under way at the Mayo Clinic shows how such technology can be used to improve outcomes and lower costs in health care.
Defining the care a patient can expect to receive and what the road to recovery will look like is crucial. When care expectations are not well defined or communicated, the process of care may drift, leading to unwarranted variation, reduced predictability, longer hospital stays, higher costs, poorer outcomes, and patient and provider dissatisfaction.
With all this in mind, a group at the Mayo Clinic led by the four of us developed and implemented a standardized practice model over a three-year period (2010-2012) that significantly reduced variation and improved predictability of care in adult cardiac surgery.
One of the developments that germinated in that effort was the interactive Mayo myCare program, which uses an iPad to provide patients with detailed descriptions of their treatment plans and clinical milestones, educational materials, and a daily “To Do” list, and to report their progress and identify problems to their providers.
The Founding Fathers had one. Karl Marx had one. Bertrand Russell and Albert Einstein had one. And, now I have one: a manifesto, declaring my intent to live my life with as little interaction as possible with the US health care system by doing what the Affordable Care Act (ACA) tells me by omission I do not need to do: take responsibility for myself.
This is my Personal Affordable Care Act.
My manifesto is an algorithm for thriving in spite of the government’s naked and absurd attempt to define health as something that begins in the clinic. My goal is to make myself and my family as scarce as possible within the health care system.
The ACA is a collective solution to the mass failure of individual will. Our transformation into an information culture actually worsened the malady. We are so conditioned to success at the speed of a search engine that, like the person who aspires to retire early, but refuses to save, we’ve forgotten to manage the fundamentals.
First, that every healthy lifestyle decision you make today, from diet and exercise to outlook and mood, requires thought and an exertion of will. Even in the age of Google, volition matters, and choosing not just wisely, but strategically, is an option available to most people.
Second, despite revolutionary democratization of medical information, we still don’t do our homework. Americans visit physicians 3 times per year on average, and the number one reason for the visits is “cough.” Really? You need to go to the doctor for a cough? Unless you have a fever, chest discomfort, bloody sputum, or the cough lasts for weeks and keeps you up at night, it is almost certainly viral or related to an allergen and self-limited.
Mrs. X is a 46 year-old mother of two and wife to an Iraq war veteran. On this particular day she meets with her oncologist to follow up after treatment for skin cancer. Beyond her well-groomed hair, thick plastic framed glasses and coral-red manicured toes, she doesn’t have a clear agenda for her appointment and expectations have only been vaguely outlined. However, this will change.
Wired Magazine asked Mucca Design in 2010 to reimagine the blood test report and the result was an inspiring new way of communicating with patient. 2011 marked the launch of the Tricoder X-Prize worth $10 million supported by X-Prize Foundation and Qualcomm. The goal is to bring to life the fictional Star Trek multifunctional handheld medical device that can scan, analyze and produce results with a goal to diagnose patients better than or equal to a panel of board certified physicians. And while 2012 launched a series of new medical innovations that leverage the power of the mobile device, 2013 will be a time to bring together these technologies into a web of interconnectedness.
In 2013, Mrs. X and her mobile device will have access to a digital medical record that gives access to prior appointment notes, recorded videos from remote mobile appointments with her team of physicians, and yesterday’s blood work results. New innovations in medicine will create a foundation for Mrs. X to have better access to care, translate her behavior into actionable data all being tied together to provide what is most important: validation.
“Any system of care that depends on the personal knowledge and analytic capabilities of physicians cannot be trusted.”
Finally, I’ve come across a really spot-on analysis of what ails healthcare, and some proposals that have serious potential to improve healthcare for people like my patients. Come to think of it, implementing these proposals would surely improve care for all patients.
The analysis, and the proposed fixes, are detailed by Dr. Lawrence Weed and his son Lincoln Weed, in their book “Medicine in Denial.” (The quote above is from this book.)
The book is a little long, but for those who are interested in leveraging technology to make healthcare more consistent and more patient-centered, I’d say it’s a must-read and must-discuss. (I’m a bit surprised that this book doesn’t seem to have many reviews, and that Dr. Weed’s ideas are not more often cited by those advocating for digital health and patient empowerment.) In particular, the Weeds’ book provides:
An excellent description and analysis of two huge fundamental problems in healthcare. One is the way we persist in relying on fallible physician minds to manage the process of evaluating, diagnosing, and managing medical problems. The other is our lack of standards for consistently documenting and organizing information related to our evaluation and management of patients. Both lead to idiosyncratic, disorganized healthcare that generally serves patients poorly, especially those who are medically complex or have multiple chronic conditions.
A proposed method of using computers and technology to consistently connect patient data to medical knowledge, leading to better diagnosis and medical management.