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TechnoratiPair Seek to Make Health Care System Navigable
SAN FRANCISCO - Adriana Boden was a healthy 33-year-old woman until one day in March 2007 when she felt like an explosion went off in her head.
![[Google employee Adriana Boden hopes to share with the general public lessons she learned about working with the health care system. (Michael Macor / The Chronicle)]](http://www.commondreams.org/files/article_images/boden_0.jpg "boden.jpg")
Although she went to her doctor immediately, it would take nearly a year of doctor visits, diagnoses of everything from migraine headaches to encephalitis, unnecessary drugs and treatments before a physician finally figured out what was wrong with her.
It was a relatively simple test - one that Boden, through her own research, suggested and was eventually ordered by a physician who listened to her - that led to her diagnosis of epilepsy. Because her symptoms weren't typical - she didn't appear outwardly to be having seizures - doctors didn't consider epilepsy. Once on the proper medication, her pain disappeared and she was able to return to work and other activities.
Boden, a sales manager at Google Inc. in Mountain View, wants to take what she's learned and use her technological know-how to help other patients better navigate the fragmented health care system.
Along with San Francisco dentist and author Julia Hallisy, she founded a nonprofit organization and Web site called the Empowered Healthcare Community, which will officially premiere at a conference in San Francisco on May 16. Speakers at the Empowered Healthcare Conference include UCSF professor and author Dr. Dean Ornish, along with patients, doctors and health care advocates.
Many Americans - even those with insurance and access to care - are frustrated by the U.S. health care delivery system. About half the public believes the American health system has a "major problem" with patients receiving unnecessary tests and treatment, while two-thirds agreed the major problem lies with patients not getting the tests and care they need, according to a survey released this week by National Public Radio, the Kaiser Family Foundation and the Harvard School of Public Health. That same survey found 44 percent of respondents reported having problems coordinating care among doctors.
Boden said there were many things she wished she had known at the onset of her illness that could have helped or shortened her search for a diagnosis and cure. "I needed to learn how to be a patient, and I needed to learn how to research and how to partner with a doctor," she said.
She formed the organization in part because most of the patient advocacy and networking groups she found were specific to certain diseases or didn't offer her the kind of help she needed. She wants the group to offer advice and resources, as well as serve as a networking tool and clearinghouse for patients.
"I want to give people confidence and help them find the courage to help themselves," she said. "One thing that happens when people get sick is they feel isolated. They often lose jobs, their income and have challenging situations with their families. They suddenly go from very independent to dependent."
Hallisy, the group's co-founder, spent virtually her daughter's entire life - from the time she was diagnosed with cancer at five months until her death in 2000 at age 10 - pursuing the treatment her daughter needed. She said sometimes she felt the system was working with her, while other times she had to do her own research and take charge.
Hallisy last year published "The Empowered Patient" to give patients practical tips about their rights and safety issues.
"Our goal for the organization is to give patients an unprecedented level of information they don't have access to," she said. "They may have access to information, but it's very fragmented. We want it to be a hub, a portal, a place for people to go."
Boden's physician, Palo Alto internist Darren Phelan, said patients and doctors need to work together now more than ever due to the information age.
Doctors, he said, have a tendency to get stuck in the patterns they know. Meanwhile, patients don't always find the right resources.
"You can search on the Internet and find a study that will support or refute a lot of things," he said. "By looking at one bolt in the airplane of medicine, you're not going to see the whole picture."
The Empowered Healthcare Conference will be held at UCSF's Mission Bay Center, Robertson Auditorium, 1675 Owens St., in San Francisco. The conference is open to the public and registration is $80. Limited scholarships are available. For more information, go to: empoweredhealthcon.com.
14 Comments so far
Show AllGood doctors are being hounded and persecuted by healthplans insurers through their influential friends at state licensing agencies.
Many have been persecuted by state agents in the interest of protecting the public. Dont accept this polyannish foolishness. Many docs have faced humiliating reprisals for standing up for patients and have found themselves villified by the state and their collaborators at all levels of medical care. The public has only fallen for the select stereotyped docs who sold out and are ostentatiously affluent. Its time the public seeks out those docs who have been systematically devastated all for being original heroes at a time of great uncertainty. It is time to ask the feds to protect medical whistleblowers and for the Dept of Justice to convene a panel of independant docs to advise on how to control medical fraud.
This is what we get for having thousands of systems of health care instead of one, single payer, and having all that duplication which such number of systems which don't damn work but cost too much gives everybody.
AD
Why do unconscious patients not always act in their own economic self interest? Hmm. I wonder.
As long as we have a bizarre IRS system, we need competent personal tax accountants to guide us. As long as we have a crazy medical system, and especially while we ourselves are unconscious, we need competent personal medical advocates just short of lawyer competency to wangle the economics for us. No that test isn't necessary. You bungled that surgery you butcher and now you're getting the whole operating room crew to cover up for you. Tell the insurance company that their little preexisting condition game won't fly this time.
You could in theory have an honest and trustworthy medical community, validated and audited by a third party certification process. BWAAHAHAHAHAHA!!
That lady in the picture looks beautiful. I feel sorry for her that she has to age just trying to make anything out of this healthcare mess. Good luck out in SF. I guess every place has its bright and dark spots.
Terrance Mitchell
Redfield, South Dakota
Adriana Boden and Julia Hallisy are sweethearts no doubt and courageous women willing to risk even their own jobs just to help as many people as possible navigate through the healthcare system. The costs of living in San Francisco are already so high that with the income I'm earning, I'd be homeless if I were living there. I wish them the best and may God bless them.
Don't try to go to their web site. It will crash your browser. They appear to be fishing for donations.
The average doctor following insurance company guidelines has about 17 minutes to deal with your medical problem. There are plenty of online resources for doing your own diagnosis (http://emedicine.medscape.com/). If you have anything out of the ordinary wrong with you, this is the only way you're going to find out what it is. Getting proactive about health care is a good start toward surviving in a dysfunctional medical environment. But ultimately, when it's time for surgery or therapy, you have to locate a wide awake specialist. I believe they exist, but I have not yet encountered one. Maybe at the Mayo Clinic. Maybe in Canada or Europe. Most Americans need, or will need, a realistic guide to finding professional help. Lack of universal insurance and prohibitive medical costs are only preliminary hurdles in a stressed assembly line health care system run by the insurance industry. Real doctors can't function in such an environment, and are getting difficult to find at any price.
Yes, like when I was pregnant,especially for my first child. I could not find a mid wive which could take my insurance, so for the first three visits I had to go to a med group in Long Island. Those three visits cost my isurance company 1,000 dollars. the total amount of time these doctors spent with me was about 1.0 hr. One measley little hour for three visits for my first child and I was 38 years old. They did nothing except precribe vitamins which i knew to take anyway. (I took vitamins from the health food store for pregnancy, not the doctors vitamins). THis was in 1996. I can't imagine what it would cost now.
I finally did find midwives, that was great. Because the doctors were acted like I wasn't even in the room. One came in on a visit, never even looked at me or spoke to me-talked to the nurse after looking at my chart and left.
This will most likely make it much more difficult for the present system to provide the medical care it does. Which is grossly inadequate, and centered around profit margins for the principle players which are structured from the top down' Insurance Companies at the top, then Hospitals/Clinics etc, the the Doctors*, Nurses, and other providers.
An informed patient is the night mare of most Doctors*, and the laughing stock of most Insurance companies*, but over time might prove effective.
* With few exceptions (and so few as to be powerless to make change no matter how badly it is needed) the Doctors in the US Health care system are "bottom line players". Most are simply interested in making their $1.5 million (minimum) per year, and will play whatever tune/or is that "toon" they are instructed to by the Insurance Companies who have total control---since they have total control over the political process. When they and the Insurance companies are presented with informed patients they take notice, and make their decisions more carefully. One of the reasons why the Insurance Companies have lobbied for so many years for "Insurance Caps" on settlements (which should be criminal)was because the patients were better informed and this leads to more suits, which leads to more suits, and so by their logic; put caps on the settlements is cheaper than correcting the system. All during this few if any doctors were willing to present opinions in favor of the patients because this would negatively impact their bottom lines---or so they were convinced by the Ins. Cos.------they have allowed themselves to become the "delivery personnel" for a defective system.
Having been in the Equine Industry for more than fifty years (since childhood) our biggest group of investors are the professionals, and Doctors usually lead the groups. They also consume a high volume of the "recreational Equine" areas, and I personally have grown to know many Doctors very closely----I do not consider any of them friends. This made a recent need for Medical Care for serious conditions a combination of results, and a law suit against one Insurance carrier has effectively been stalled for over five years--or so they think.
If insurance companies are in business "to take in money", then they will do what they need to do to keep from "putting money out"---they can write off the legal expenses of fighting any cases-----and it is more profitable to keep the system in place than to make changes---no matter how badly they are needed. Besides, they can all afford the "best money can buy".......
And if you need to use the VA Health Care system----well we used to say in the USMC---"put your head down between your knees and kiss your ass good bye"---"you are screwed".
If the American People want adequate medical care for "all people" then taking the Insurance companies out of the picture will make the doctors more reliable and the services will go to those who need them, not just to those who can "pay for them"..........
If I have angered any doctors out there with this observation----"tough shit"--you can "cry all the way to the bank".
Those of you who are not guilty will find no offense---since your voices are almost silenced by the drone of the others.
Good Luck America, you really need it.
True. And what in the Hell is wrong with that over one half of Americans who don't think that the American Medical System is a mess? Are there really that many of our neighbors that are brain dead?
Seems to me that the people who oppose health-care reform the most are those who provide our health care. e.g. Why does it take so long and so much money to get an M.D. license? It takes only 4 years to get any type of engineering degree. If I have a common illness, like bronchitis, or if I slice my finger while peeling potatoes, I think someone with as much education and training as a civil engineer could diagnose the congestion in my chest or sew-up my finger. It ain't rocket science.
Profit is priceless. Life is cheap.
Nurse practitioners could take care of most of our routine medicial care. Anyone with the grades to get into medical school should have an option to work off the cost with community service at a reasonable salary.
Medical training and licensing has become a way to restrict practice to favor a small moneyed elite. Most people, especially women who wish to have children while still young, cannot afford the cost of medical school, the enormous debts, nor the long period of low pay interneship just when they would like to start a family.
Joe
Joe you fail to understand what motives brought the use of midlevel practitioners to the medical workforce.
Dumming down medical care, to maximize revenues by increasing the traffic of patients seen in any practice is what motivated the industry to bring in unqualified nurse practioners and physician assistants. At first they were introduced to work under onsite supervision. Now they clamor for independant practice. All bs. They are the agents of substandard corporate commoditized healthcare. Not medical care, which requires all the years and more of education and training. Throwing in a compliant servile midlevel vocational technician or an imported medical graduate of dubious qualifications as an immigrant visa slave is the design of our master benefactors.... Enjoy the grease. Time to wake up and know whose been playing with you.
Yep, totally agree with you.