Gotta put your money (or OUR money) where your mouth is!

Thousands of patients like deBronkart are learning as much online — and from one another — as they are from their doctors. These laypeople are banding together and starting websites to help figure out which practitioners to see and which hospitals to avoid, which clinical trials show promise and which experimental treatments are bunk. But as people take more control of their health care — joining an empowerment movement many are calling Patient 2.0 — plenty of doctors are worried about the quality of the information that is being assessed as well as patients' ability to understand it. Or as Duke neurology professor Dr. Richard Bedlack puts it, "Just because you have the tools to work on your sports car doesn't mean you're ready to do it."

Frustrated by how long it takes cutting-edge knowledge to trickle down from the lab to the doctor's office, patients have been rushing to come up with their own ways of achieving what the health care industry calls rapid learning.

Sharing data — as well as giving people full access to their digitized health records — is being championed by deBronkart, now an online activist known as "e-patient Dave." He has teamed up with Dr. Daniel Sands, the physician who helped him kick his cancer into remission in 2007, to co-chair the newly created Society for Participatory Medicine, which encourages patients to learn as much as they can about their health and also helps doctors support patients on this data-intensive quest.

An  important, and  informative piece that introduces on some of the reasons why the the e-patient, participatory movement is gaining so much traction.

Many patients are starting to engage online... they want/need actionable information... and they need it now. When you're staring Stage 4 disease in the face, waiting weeks or months for visits with a presumed expert is not an option.

I am clearly one of those physicians who *admire* the participatory movement and embrace many of its guiding principles.... but (there's always a but)... there's a lot of *bad* information *out there*. Snake oil salesman abound at every corner of the internet... ruthlessly taking advantage of the petrified, and frequently mis-informed who are reaching for any potentially life saving/prolonging alternative.

I believe physicians have a tremendous opportunity (and perhaps obligation) to actively engage the participatory medicine, patient 2.0 movement.

I feel physicians need to *stand-up* and engage the e-patient.

We need to be there as a team member, coach, team leader, teacher and care giver. We need to provide guidance and perhaps a sounding board for patients who are thirsting for knowledge.

The patients are going to continue to pursue their online endeavors... regardless of whether or not the physician community engages. If physicians choose to sit back and wait for patients to come to them... it may be too little, too late....for both parties!

 

Addendum:

Danny Sands put up a short thoughtful post on the e-patients.net forum.   In this post he challenges the establishment ("who talk the talk but don't walk the walk") and is seeking advice from the crowd regarding what efforts, infrastructure or services *we* believe must be in place for a physicians office or an intsitutions to be *certified* as offering patient centric care.

Some of his proposed criteria include:

 

• Do you use an electronic medical record?
• Can patients can see their records online?
• When the EMR is being used in the office, is the screen is oriented so patients can see the record while the clinician is using it?
• Are there internet-connected computers and/or free wireless access available for patients/families?
• Do you have a patient/family advisory board?
  • Do you listen to them?
• Do you provide online patient services: education, tools, prescription requests, appointment requests, etc.?
• (Hospitals) Do inpatients have free, reliable and modern entertainment systems?
• Can patients/families contribute to the medical record?
• Are patients encouraged to seek health information on the web, offered advice, and given helpful answers to questions about what they find?
• Are intake forms online, prefilled when possible? (Not handwritten on clipboards)
• Do providers appreciate that most care takes place outside the office/hospital? (See Doc Tom Ferguson’s famous “steal these slides“)
• Are providers comfortable saying “I don’t know—let’s find out together”?
• Do providers practice shared decision making with patients and caregivers?
• Are patients encouraged to interact with their providers using secure messaging and other tools besides the telephone?
• Are patients always informed about test results?
• Does every encounter end with the provider asking if there are other questions or concerns?

Truly patient centric care has  the ability to revolutize how medicine is practiced and how patients receive care.   Is your practice up to the challenge?

after all....

We all stand to benefit, because....  WE ARE ALL PATIENTS !!!

Leaving a meeting of the House Democratic Caucus, lawmakers said they had received few details about what would be in the legislation, on which they may be asked to vote in the next week or two

Read this article... PLEASE read this article from the NY Times. Lawmakers (Democrats) do NOT know what is being put into the bill they will be *asked* to vote on next week !!!! How can we sit back and let this be ???? Where is the outrage? How can we possibly expect someone to vote on one of the biggest legislative packages to hit the floor of the Congress in decades.... without even having a chance to read the bill!! Granted, Pelosi and company don't care if that's the case and will twist arms to get the votes she needs... but to deny Americans and their elected representatives time to review the legislation before a vote is to be held is undemocratic, embarrassing, unethical, unpatriotic, etc , etc, etc.
Full Disclosure... I am a firm believer that our system requires reform... true health CARE reform. Not insurance reform marked up along side a whole host of taxes, and hand outs to banks, states and other special interests....

Their blind persistence in the face of reality threatens to turn this political march of folly into an electoral rout in November. In the wake of the stinging loss in Massachusetts, there was a moment when the president and the Democratic leadership seemed to realize the reality of the health-care situation. Yet like some seductive siren of Greek mythology, the lure of health-care reform has arisen again.

As pollsters to the past two Democratic presidents, Jimmy Carter and Bill Clinton, respectively, we feel compelled to challenge the myths that seem to be prevailing in the political discourse and to once again urge a change in course before it is too late. At stake is the kind of mainstream, common-sense Democratic Party that we believe is crucial to the success of the American enterprise.

The authors, seasoned veterans to Democratic leaders of the past, go on further to state "...Nothing has been more disconcerting than to watch Democratic politicians and their media supporters deceive themselves into believing that the public favors the Democrats' current health-care plan. Yes, most Americans believe, as we do, that real health-care reform is needed. And yes, certain proposals in the plan are supported by the public."

Rassmussen poles show that americans fear govt decisions in healthcare more than the decisions of the health care insurers.

The door was open to get health care reform passed... meaningful reform. But that door closed a long time ago. If an incremental approach was applied, which put forth multiple easy to swallow packages that individually dealt with separate, important issues in health care reform, then, I imagine it would have been law by now. But Congress and the Prez lost control and now risk loosing big.

A combination of both is at work, but now new evidence and guidelines are recommending a step back and more thorough doctor-patient conversations about risks and benefits.

As a medical journal editorial said this week about Obama's recent checkup, Americans including the commander in chief need to realize that "more care is not necessarily better care."

Obama's exam included prostate cancer screening and a virtual colonoscopy. The PSA test for prostate cancer is not routinely recommended for any age and colon screening is not routinely recommended for patients younger than 50. Obama is 48.

Granted he is the president... but leaders need to lead, and lead by example.

Did the president need four physicians participating in his *routine* physical?

President Obama's *unnecessary* care is calculated to have cost the American taxpayer in excess of $5200. If we took the American population of roughly 307 million and multiplied it by this amount one gets a sum of 1,596,400,000,000 or roughly 1.5 trillion!

That is in fact more than the cost of President Obama's entire healthcare package over a span of almost 10 years.

While reform moves forward... or move aptly is forced forward, there are too many elephants in the room that are simply being shoved aside to make room for the waste that continues to build up :-)

These resistance efforts are not about law — they are about politics. But of course at this point, health care reform is only about politics, except insofar as it is still about the morality of equal treatment for all.

I am not a constitutional lawyer, but I believe that states have the right to determine how to care for, educate, tax their constituents... pls correct me if I am wrong. While VA's republican majority gov't has put this bill forward, it did have significant Democratic support. As far as I know, this is the only reform legislation that can claim that...sad as it is.

Our recommendation: scrap it and start over. Its key elements—mandates, heavy-handed insurance regulation, and entitlement-based, middle-income subsidies—must go. None of them address health care's fundamental problem: high and rising costs. Instead, the various versions of health reform put forth by the president and his party are based on expanding health-insurance coverage. The inevitable consequence will be to exacerbate the cost problem. And the American public knows it.

To bring down costs, we need to change the incentives that govern spending. Right now, $5 out of every $6 of health-care spending is paid for by someone other than the person receiving care—insurance companies, employers, or the government. Individuals are insulated from the reality of what their decisions cost. This breeds overutilization of low-value health care and runaway spending.

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To reduce the growth of costs, individuals must take greater responsibility for their health care, and health insurers and health-care providers must face the competitive forces of the market. Three policy changes will go a long way to achieving these objectives: (1) eliminate the tax code's bias that favors health insurance over out-of-pocket spending; (2) remove state-government barriers to purchasing and providing health services; and (3) reform medical malpractice laws.