(I promise! I will try to make my next post something more light-hearted! This is just an issue I've been paying a lot of attention to lately, so I keep learning new stuff I want to share...) There's a long-standing belief that one of the guiding principles of medicine is that our medical records are confidential, and that our health matters are not disclosed to anyone other than ourselves, another physician who is consulting or taking over our care, a person we specifically give permission to see our record and - in the case of certain infectious diseases - the local health department, if it's mandated by law. That list, it seems, may be about to get bigger - especially that last category - things reported to the health department. Currently, tests are being done on a system that would "streamline" and "automate" the reporting of our health records to governmental agencies. As noted by Sandy Swarcz [Emphasis mine]:

A report in the new issue of Morbidity and Mortality Weekly Report, a publication of the U.S. Centers for Disease Control and Prevention, gives us a picture of the future, as health insurers and governmental agencies perfect the surveillance capabilities of electronic medical records. Harvard Pilgrim Health Care,** Atrius Health, the Massachusetts Department of Public Health, and the Department of Ambulatory Care and Prevention at Harvard Medical School collaborated, under the auspices of the CDC Center of Excellence in Public Health Informatics at Harvard Pilgrim Health Care and Children’s Hospital in Boston, to create a system called Electronic Support for Public Health (ESP). This system, designed to be compatible with most commercial electronic medical record systems, will automatically scan medical records, including patient demographics and vital signs, lab tests ordered, prescriptions, diagnostic tests and ICD-9 billing codes to identify illnesses and electronically report them to government health departments. It also includes healthcare provider details. The MMWR paper, authored by J Dunn, MPH, at Harvard Medical School and Harvard Pilgrim Health Care, said that traditional reporting methods often lack sufficiently detailed information for public health purposes, such as targeted investigations and interventions, nor do they integrate different sources of information in a way to make case identifications.

In other words, where as our current system is supposed to ensure that, even when statistical information about reportable health conditions are send to the CDC, it is generally send without identifying information to help preserve our confidentiality, one of the functions of this new system will be to help make sure that they can identify each case. This isn't entirely unprecedented - last year, plans were underway to require all states to start tracking all cases of HIV/AIDS by name. Until now, most states have used anonymous patient code identifiers, to help ensure the privacy of HIV/AIDS patients. Now, however, the Federal government is requiring that the records be kept using the patient's name. In addition to the general violation of privacy that creates, there are concerns that some people will not get themselves tested or treated until it's far too late out of concerns that a record identifying them as an HIV/AIDS patient will then be created, and, of course, there are also the security concerns that come with something like this. Keeping records in an electronic database that's set up for allowing information to be easily shared between various agencies, offices and companies means that there is a risk of someone breaching any security on that system and obtaining the information it contains. (And that's not just a concerns for HIV/AIDS patients, but for anyone who has a health record in this system.) Sandy also points out [Emphasis Sandy's]:

An accompanying CDC editorial note regretted that electronic medical records don’t yet contain “certain pieces of key epidemiologic data in a coded form that can be identified readily by electronic algorithms. Examples include case contacts, risky behaviors, foreign travel, and relevant occupations (e.g., food handler or day care worker).” [emphasis added] [Read this again. While communicable diseases might make these surveillance and involuntary reporting capabilities seem beneficial, think about the future implications and potentials for abuse (with no protections in place) -- of government and insurer surveillance of any lifestyle behaviors or 'disease' conditions they might consider as risky in the name of public health, the repercussions of the government reporting and sharing information about health conditions or “risk factors” with employers or other stakeholders, and that it even wants to be able to identify people you associate with and your movements. Think about the groundwork being laid. The CDC has already proposed policies for how the government can collect, use and sell our electronic medical records; and demonstrated it can enforce compliance by state health departments for tracking certain conditions by threatening to cut off their federal funding. The HHS has similarly shown it can make people comply with 'healthy' lifestyle and medical prescriptions by restricting healthcare benefits or government benefits; and affect doctors' compliance through pay-for-performance measures. The arguments** opposing legislation to protect the privacy and use of genetic information, used by the country's insurers, described how they envision using genetic information. The significance goes far beyond issues of security, identity theft and the confidentiality of private health information — in which we are regularly provided with examples of violations, such as the report this week of 61 patient medical records improperly accessed at UCLA, including those of California first lady Maria Shriver.]

Additionally, as a footnote, she adds [Emphasis mine]:

** Harvard Pilgrim Health Care, a New England healthplan with more than a million members, was last mentioned when its medical director of clinical policy spoke to the U.S. House, opposing the Genetic Information Nondiscrimination Act. [This legislation would prohibit health insurers from using genetic information to set eligibility, premium, and/or contribution standards; prohibit insurers from requesting or requiring genetic tests; prohibit employers from using genetic information in making employment decisions, such as hiring, firing, and promoting; and prohibit employers from requesting, requiring, or purchasing about an employee or an employee’s family member.] The law could get in the way of insurers who want the ability to mandate genetic tests to use in deciding what treatments they will cover or deny, and to identify people for compulsory disease management.

There's much more in Sandy's article, and I think its an issue that we should all give consideration to. Note that one of the conditions they want to be able to report on is "risky behaviours." That can be a pretty wide category. Certain sports are generally considered to be a "risky behaviour" - especially the newer "extreme" sports. Others might include eating habits, smoking, drug and/or alcohol use - and, of course, alcohol use and the use of medicines and/or other drugs by pregnant women could be examined to make sure she's not putting the fetus at risk - even your sexual orientation or various sexual practices could be included (especially if you develop an STI or have something else happen in which your sexual proclivities are relevant to your health treatment and are added to your record). Do any of us *really* want the government - and insurance companies, natch - to have that much information about us? I know I don't!

Earlier this week, CitizenSugar posted an article entitled "Fatism is the new racism? Do we need need a law against it?" Several people responded from both sides of the issue, and there was some really good discussion taking place. One thing that I, being a fat person, appreciated is that while there was some of the usual "Fatties would be just fine if they'd stop stuffing their faces and get their fat asses off the couch" comments, they were balanced out by posters who either understood that the situation isn't anywhere near that simple or found themselves feeling more compassionate about the situation after reading the stories about what some of us who are fat have gone through. I've mentioned this statistic a few times already, but it tends to bear repeating - and in this case, its important to understand because it has a great deal of relevance to the comments below. There have been a great number of studies done on the viability of intentional attempts at losing weight. They "intentional" is included to differentiate people who are wanting to lose weight from those who lose weight from sickness or other such factors. These studies have consistently shows than 95% to 98% of the time, when someone attempts to lose weight intentionally, they will fail to lose as much weight as they intended and/or even if they *are* successful in reaching their goal, they will regain all of the lost weight - generally with more added - within 5 years. This takes into account all types of diets, diets-and-exercise programs, weight loss surgery, weight-loss maintenance programs for people who have met their goal, and any other methods people use to try and lose weight intentionally. Only 2% to 5% of the people who try to intentionally lose weight will reach their goal and keep it off for 5 years or more. Statistics also show that people who repeatedly diet and regain the weight they lose or end up even heavier than they were when they started, are much more likely to suffer a shorter life-span than people who are fat but do not repeatedly dieting. The "yo-yo" dieting syndrome is harder on the body than just being fat is. Think about that for a moment. Imagine that you had an illness, and the doctor came in and told you that they only had one treatment option, but that it's only effective 5% of the time, and each time the treatment fails, there's a very strong chance it will make your illness worse not to mention that using the treatment repeatedly, hoping that *this* time it'll work, increases the chance that you'll have a shorter lifespan. Just how eager would YOU be to try and treatment time after time? And how would you feel if people kept trying to push you into using the treatment, or started discriminating against you because you've decided you're better off dealing with the illness itself than the risks of the treatment? That's the situation that we face. A blog I frequent is Junkfood Science, run by Sandy Szwarc, RN, BSN, CCP. Her blog focuses on research and studies done about obesity, examines the way some studies can be distorted or "spun" when they're made public, researches who financed studies and what - if any - financial interest they might have in the outcome, and trends that can result from a misunderstanding of what some studies actually show. Prior to starting her own blog, she frequently posted at TCS Daily, which has a biography page about her, her background in both health and food, along with a list of publications she has written for. Her current blog is rated as the top health blog at Wikio, and she notes that her blog adheres to the Medblogger Code of Ethics. I'm telling you all this, because I want you to know that this is not some fly-by-night flake with a personal hang up or a wild conspiracy-theorists or anything else like that. Szwarc is a long time health and food professional, with a solid reputation. It's this last aspect that she recently posted about in an article called House to House searches -- for twinkies and guns?. She begins by commenting on recent efforts in Boston and Washington DC to enact programs where the cops can go from door-to-door and search peoples' homes for guns as part of a "Safe Homes" program. The officers would not need warrants for these searches (though they may need to get the homeowner to sign an "informed consent" statement) and homeowners found to have illegal guns would be given amnesty from illegal-weapons charges. If the guns are tested and found to be tied to a crime, however, they homeowner could be investiged and charged with that (if appropriate) and it's unclear what happens if they find evidence of other crimes while doing the search. Sandy then poses the question of what other kinds of things might authority figures be sent door-to-door to look for - and notes that it's not all that far-fetched to think that they might come and want to look at your pantry, since that's already happening in the US. Below is the portion of her post related to that issue - any emphasis is mine:

A knock on our door

What other reasons might public officials use to convince people to allow them to search their homes and private lives, and believe that such intrusions are for their own benefit? Might we get a knock at our doors asking to go through our pantries and refrigerators to make sure we’re eating the prescribed “healthy” diet; to assess our weights, exercise and smoking habits; and to monitor our compliance with health prescriptions and report us if we’re not being good? Incredibly, it is not a far-fetched idea that agencies might want to make such door-to-door searches in the name of public health — because they already have! As part of the plans of Health Secretary Patricia Hewitt, “unfit and overweight Britons will get doorstep visits from NHS staff to track those at risk of future illness.” As the Observer reported, “staff could ask people in certain streets about their lifestyle — and invite those at risk for a health 'MoT' with their GP, after which they could sign agreements to lose weight or stop smoking...” Sec. Hewitt said the government had to start going to people and not wait for them to go to the doctor. She said those with “genetic inheritance” need especially intense interventions to “ditch bad habits.” “At least two primary care trusts were already getting staff to knock on doors in streets they had identified as high risk for disease, often in low-income areas,” she said... The approach will be highly controversial, prompting charges of snooping on people's private lives and interfering in their freedom, the Observer reported. Comparable programs have been suggested or already instituted here in the United States. Proposals were made by the California Department of Health for door-to-door searches of young Latina and African American women in low-income neighborhoods to assess their health risk behaviors, purportedly to tackle HIV and STDs. A program funded by the National Cancer Institute, targeted 350,000 families of preschoolers in St. Louis, Missouri, who received a knock on the door asking them about their eating habits, going through their pantries and reviewing their grocery shopping lists. It was part of a “High 5 Low-Fat” program to address childhood obesity by telling parents how to feed their children “healthy” by cutting fat, getting fruits and vegetables, and reducing “bad dietary choices.” A similar anti-obesity initiative was introduced last summer by Dr. Mehmet Oz, author of the You on a diet diet book and an Oprah regular. Funded by $250,000 from the New York City Council, the program he founded is called HealthCorps. Modeled after the Peace Corps, it pays college graduates to go around the city and council kids on diet and exercise. Another initiative to fight obesity proposed by economists at Brookings Institution, called for establishing a “Retired Healthcare Professionals Corps.” Retired physicians and nurses would be mobilized into “cadres of community healthcare workers” to go door to door and to give residents information about common diseases and “monitor compliance with prescribed regimens, and communicate with healthcare providers about the needs and circumstances of neighborhood residents.” Citing Robert Wood Johnson Foundation extensively: “My idea is to mobilize retired physicians and healthcare workers to serve their country by joining in a crusade to combat childhood obesity, especially in those communities and among the children where the problem is most acute.” The authors said it was necessary to make “lifestyle medicine” a credentialed clinical specialty and part of basic medical training because of the “serious health threats confronting our nation” and that these Corps were necessary because primary doctors didn’t have time to do “the extensive counseling on nutrition, exercise, and lifestyle changes that is required to treat obesity.” They also noted that genomics will soon bring the ability to identify those at risk for chronic diseases and in need of intervention.

While the articles from which the examples were drawn talk about the programs being voluntary, there's still something unsettling about the prospect of someone coming to your door and saying they want to poke around in my kitchen and review my grocery lists to make sure I'm eating right (or that the children in the home are being fed properly.) We've already seen situations where parents have had - or were threatened with having - their children removed from their homes because they children were obese. Who's to say that these people coming into homes to check your pantry won't decide to call your local CPS if they think your kid is too fat? In the article about the Brooking's Institute suggestion of using retired doctors to help monitor patient compliance, it also notes the following:

Finally, the federal government as well as insurers and employers are beginning to flex their muscle by prodding Medicaid patients and employees to take better care of their health. For example, the State of West Virginia plans to reward responsible patients with significant extra benefits and punish those who do not join weight loss programs where indicated. Medicaid recipients who sign and abide by the agreement with the state would be eligible to receive enhanced benefits, including mental health counseling, long-term diabetes management and cardiac rehab, prescription drugs, and home health visits as needed, as well as antismoking and anti-obesity classes. Those who do not sign up will get the federally required basic services, but they would be limited to four prescriptions a month and be denied other enhanced benefits.

So, the lucky 5% who are actually able to lose the weight they want and keep it off for 5 years or more get better care, and to hell with the other 95%! What I find ironic, though, is that if losing weight is supposed to cure or control diabetes, improve your heart health and maybe even reduce your depression, that why would you need the mental house counseling, long-term diabetes management and cardiac rehab? Should those pretty much fix themselves? And if losing weight increases your mobility, what do you need home health care visits? And on the flip side, given the intertwining of obesity and depression, denying someone mental health care because they can't lose weight seems counterproductive, as does denying them long-term diabetes management and cardiac rehab. If the recalcitrant fatties who can't lose weight don't do the state of West Virginia the favour of dropping dead, thus no longer needing *any* health care, won't denying them these services - in addition to limiting their access to medications just end up making them sicker - and thus even more expensive down the line? Someday - and it'd be nice if it were sooner rather than later - society is going to need to truly comprehend that diets, diets-and-exercise, weight-loss surgery and other intentional weight loss methods simply do not work for the vast majority of people who are overweight or obese and that continually losing and regaining weight is much harder on the body than not losing weight at all. Once that happens, maybe - just maybe - people will stop trying to punish fat people for being fat. I doubt it'll happen in my lifetime (especially since it's supposedly going to be so much shorter,) but one can always dream...