A wonderful story of participatory medicine
Amy Marcus, in today’s WSJ, wrote a powerful article about a mom moving medical mountains to help her twin daughters survive a rare and deadly disease. Entitled “A Mom Brokers Treatment for Her Twins’ Fatal Illness. Bucking Scientific Convention, Ms. Hempel Gets Researchers From Different Fields to Share Data on Potential Therapy“, it is a beautiful story about the value of participatory medicine when it is at its best because:
- the mother is a prime example of the power of informed patients and caregivers,
- the researcher(s), Dr. Hildreth and others, are willing to work with this empowered caregiver in uncharted waters
Opaque, Inc.
Truth be told, at present, the activities of ”La Cosa Nostra” are more transparent that what goes on in the health care system. The only certainty I have, as an individual trying to figure out what is not wrong with the system, is what Peven Everett describes so accurately: “You/got/me/in your/Po/ /Wer/ /I can’t/decide/which/way/ /I’m stuck/”
It is as if all the participants (stakeholders in HC parlance) had decided that opacity is the key to their long term financial well being. Remember the last time you had to go to a hospital to get a procedure done? Did you try to get a detailed description of the items in the bills you received from the hospital & doctor practices associated with that medical procedure? Good luck to you! It’s almost impossible. Did you try to figure out which elements in the itemized bill were really necessary and how many were just a disguised surcharge by the hospital/docs. Good luck again! At best, the various medical bills look like a car maintenance bill where you know you have been bilked. At worse you will be fuming for days because it just does not make sense and cost you a fortune. In any case you know that you have been charged for activities whose descriptions are hidden behind incomprehensible codes, that nurses in the doctors office know by heart without knowing what they represent. Ask the doctors. They will tell you they practice medicine and don’t get involved in the office management. It’s great to be billed for activities no one can appropriately describe! Welcome to the American Health Care sytem.
Health care reform is now clearly one of the main areas of activity in DC. Last week White House Summit showed how much lobbying power exist behind the various elements of this puzzle with a gazillion pieces. At 17% of GDP, representing a $2.4 Trillion slice (3 times the amount of the Stimulus Package), the health care system is more and more like a huge weight on the US economy. It is now the largest sector of the US economy and lately the only one that keeps on growing and adds jobs. Due to costs increases that are much higher than inflation rates it has a highly negative impact on America’s competitiveness. Nonetheless every past effort to fix the system has failed, locally, in individual states and at the federal level. Wherever you look, the numbers look horrible and getting worse over time. This combination of constant and accelerating costs increase, associated with poor outcome statistics, tend to make people believe the problems are so intractable that nothing can be done to solve them. We have no solution because Opaque, Inc is at work.
Even at the individual level, you have almost no recourse because Opaque, Inc. is also at work. Anyone who had to deal with a medical procedure knows of the:
- difficulties in getting copies of reports,
- inability to reach doctors office and billing departments
- lack of explanation of the procedures and of the possible side effects
These are just the tip of the iceberg, simple symptoms of a dangerously broken system. Americans have felt for years that the problems are just getting more and more serious. Look at the table below, from the OECD:
Public Satisfaction with Health Care System
82% want at a minimum a fundamental change (34% think we must completely rebuild the system). They want a system that is accessible, affordable and adequate. Today it’s none of these. Explanations abound. It’s usually the fault of some main culprits, whose identities depend on the professional occupation of the responder or their political inclination. Doctors will tell you it’s all the fault of insurance companies, malpractice lawyers and defensive medicine. Hospitals blame other hospitals and lawyers. Public Health experts blame it all on unhealthy lifestyles. Patients blame everybody else. The government blames all private insurance companies. Old companies blame the Unions. The Unions blame the company executives. The right says it’s because patients do not pay directly for care. The left says that it is because we do not have a universal system. In short nobody is responsible. And miracle of miracles, you can shift the blame faster than anyone could ever imagine. The only unifying message from all is that it is always the fault of the others.
In the meantime, medical problems cause half of the personal bankruptcies in the US. This has been going for too long! While we keep on trying to figure out whom to blame this mess, the costs, already so high, keep on rising, uncontrollably. Understanding the system is arduous, with challenges constantly erected by insiders. The complexity of the entire system is mind-boggling, the professional organizations are fiercely defensive of their members benefits, the lobbyists are furiously working to protect the various industries, from the medical device manufacturers to the pharmaceutical companies without forgetting the lawyers, the hospital administrators and the corporations who pay a huge chunk of the total healthcare costs.
And we, the citizens, are left without any understanding, subjected to a dizzying rehash of the multiple system faults, subjected to numbers so big we cannot assess them. We never wanted to learn about the issues because we foolishly believed that we are not paying for care, since the employers do. A prime example of rational ignorance. Opaque, Inc. has masterly succeeded to exemplify the old Aesop quote “obscurity brings safety” . The American public should demand the immediate injection of a healthy dose of transparency in the entire system. In the meantime, for those of us who see the active involvement of the patients in their care as a sine qua non condition for care improvement, we should promote a much better understanding of the issues at stake. Just this past 2 weeks we have learned that the Recovery Act will pump $19 Bn ( that is $19,000,000,000!) to invest in EHRs (Electronic Health Record). Who will be in charge of these investments? Who will decide what are valid systems? No one knows. Opaque, Inc. is definitely working hard on these! Relying on experts to explain the failings of the system is just not going to work! As Jen McCabe Gorman says “We have no yet reached mutually assured destruction! But we will!” Shame on us if we fail gaining equal access at the decision table before we do! The concept of Participatory Medicine will remain an empty shell. And we will have missed an historical opportunity to operate a citizen transformation of this vital and biggest segment of the US economy.
Crowdsourced Healthcare Reform: The First Round
During 2 weeks in December 2008, over 9,000 Americans in all 50 states and the District of Columbia registered to host a health care community group to discuss healthcare reform. Thousands more participated in these gatherings. They all came together for a single, common purpose: to discuss reforming the health care system. This extensive use of social networks to promote the direct engagement of the public in policy development by the Federal government was unprecedented. It produced 3,276 summaries of the groups main concerns and 30,603 individual participant surveys, submitted on the change.gov website. All suggestions were subsequently read and analyzed, line-by-line by a team of experts. They produced a powerful analysis of the needs & solutions for in-depth healthcare reform. This unique combination of crowdsourced content and expert analysis is truly unique and a sign of things to come. Just read this paragraph from the executive summary:
The Health Care Community Discussions are a first step in this Administration’s commitment to an open and inclusive style of governance that allows all Americans to have a voice in our country’s health reform efforts. This Administration recognizes that true reform comes from the grassroots up and promises that when Americans speak, the Administration will listen. These Health Care Community Discussions reflect the President’s commitment to enlist the public in achieving a top priority: creating a health system that is affordable, accessible, and high-quality for all Americans.
I highly recommend the report. It provides a clear picture that Americans are aware of the problem’s severity and probably able to produce many of the solutions, better than any internal committee from health professionals who can no longer see outside of the existing system. Considering that not a day goes by without the President mentioning the urgent need to reform the healthcare system, the document produced may be looked at as an informal roadmap of the changes we can expect.
Trust but Verify! Groups of Patients acting as
Citizen Reputation SystemsParticipatory Medicine: Using Twitter
to maximize serendipity in a social networkFirst Published at ESUN
The ACOR Model and Experience of Sharing Information
Every day patients suffering from rare conditions experience the online version of the traditional “finding a needle in a haystack” problem. Finding relevant information is at best difficult if not outright impossible for too many people. In many cases it is possible to find some static information about the condition on a major hospital or governmental website, such as the National Institutes of Health. But, where do you turn to find the latest news and scientific discoveries that are of specific interest about the condition? If you are lucky you are already a member of one of the old and established social networks available on the Internet. If you are not, your ability to get current information is almost nil, unless you are a medical librarian or have received active help from one. Too many people are still denied access to this information which often appears in medical journals.
Most of the truly amazing and life-transforming events that have taken place through the ACOR system over the last 13 years have been a result of serendipity. Read the rest of this entry »
Note: The following comments are reinforced by the fact I do not believe in the value of the current set of doctor rating sites! My e-Patients colleague, John Grohol PsychD wrote an excellent post about the failings of these sites.
At e-Patients.net there is a raging debate about the legal repercussions of patients publicly rating their doctors. It is a nice story for the media but in fact the scandal has been brewing for a while now, starting with a couple of dentists in California suing patients who made some negative comments on Yelp. A little like Sony barring Amazon’s comments section! The deeper story is of course about:
I’m sorry but having almost universal access to the internet, it seems perfectly normal to apply the “trust but verify” rule to professionals who, more than almost with any other profession, hold our lives in their hands.
In 2003 Esther Dyson wrote a great introduction to a fantastic essay by Jeff Ubois on online reputation systems and their unique power in the new world where almost all decisions are mediated by our use of 1 or more social networks.
My favorite quote:
Read the rest of this entry »