But what if I want to avoid the healthcare system as much as possible?

I've been doing a lot of thinking (and writing) about technology and health, and much of the conversations I've heard going on have to do with improving Health IT (HIT) with hospitals, clinics, and other healthcare providers. For those seriously ill, like ePatientDave, who are depending on their records to actively help manage their own care, this is a non-negotiable must-have. You've just gotta have access to your data, if you're going to have a hand in your own survival. There's no way around that.

I won't spend a lot of time discussing this. People with a lot more expertise and drive in the HIT space are discussing this actively. There's a lot of progress that needs to be made, but there's also a lot of focus turned to it, with new electronic medical records systems coming online and formal projects underway to craft solutions for the rampant issues that are keeping the "care" out of healthcare.

What I DO want to discuss, is another focus I've had. That focus is two-fold: 1) staying as healthy as possible, so I don't have to become dependent on the medical system, and 2) being able to manage my own health issues, should they occur, with the tools and information I need to maintain the level of daily functioning that I desire. Health concerns aside (and I do have some), I shouldn't be waylaid and held back in my dreams, goals and ambitions, because of health issues I can manage myself.

Now, I've had this dual focus for over 20 years, in no small part due to the botched healthcare I've received in the past. I lost some of the most vibrant years of my life to flawed diagnoses; in my early 20's, I was told I had a serious, possibly life-threatening illness by medical professionals who even after many, many months of testing, had no conclusive, substantiated evidence that I really had what they theorized was vexing me. I spent my early 20's living in mortal fear of spontaneous internal bleeding, skin discoloration which would disfigure me for life (and never go away), debilitating pain, and degeneration of my connective tissues. When everyone else my age was running around doing what one normally does in their early 20's -- working jobs that would form the foundation of future career paths, going out on the town with friends, enjoying social and outdoor activities -- I was holed up in my apartment, laying low, trying to keep my stress level as low as possible.

I was intensely stressed, in those days, and I realize now that the stress of the diagnoses I received -- at first, discoid lupus erythematosis, then sytemic lupus erythematosis (nasty stuff, as the names imply) -- probably put a lot more strain on my system that may have caused many of the symptoms they attributed to the condition. At the time I was undergoing tests, there was not yet a conclusive rule-in test. Everything was rule-out, back then, and they couldn't find anything other than lupus, to explain my symptoms -- skin rash above my right eye that would not disappear, fatigue, pain in my joints, general weakness, and more.

So, I got assigned a diagnosis of lupus, and it was off to the races.

What a slog that was... all those tests, all those consultations... and nothing conclusive coming of it... how maddening for everyone. I followed their directions to the "T", learned all about lupus, altered my lifestyle, took my meds, did everything I possibly could... but the pain just got worse, the fatigue was crushing, and my early 20's slowly faded into a fog of pain and disorientation from the meds.

Now, I don't bear anyone ill-will in that drama. (I used to, years ago, but I've since given that up as a pointless waste of time and energy.) I spent a lot of time seeing some of the best specialists in the country, but none of them had more to offer me than a prescription for anti-inflammatories and other meds that would buffer my stomach. My symptoms weren't budging, and I couldn't get any relief. Thinking back on that time, it must have been terribly draining for those docs to see person after person in such bad shape -- I shared a waiting room with deeply suffering people many a time -- and the lack of straightfowardness about my condition must have driven them nuts. I really felt for the docs I saw, back then, and I still do. And at a certain point near the end of my active involvement with them, I asked myself -- and them -- what I was doing there, if they could not help me?

They didn't have an answer for that, aside from saying they could try to reduce my symptoms. But their attempts had not been successful to that point, and I was wearing thin, with regard to meds.

Ultimately, I stopped seeing the docs. I stopped seeking help in the medical establishment. I focused more on the basics -- quitting smoking (yes, it can be done), eating better, and making rest and good sleep hygiene a priority. These basics have continued to serve me through the years, and when I start having symptoms again -- a small rash that appears and won't go away, intensifying joint pain, fatigue and weakness -- it's pretty sure sign that I'm neglecting myself.

I guess I'm just one of those all-or-nothing kinds of people. If I'm not all-in, I'm all-out, and I pay a steep price for self-neglect. And sometimes I end up at the doctor in the same state I was before -- me looking at them, leery of the medication they're suggesting, and just wanting my life back... them looking at me, not sure what they're supposed to do for me...

That being said, for this coming year, I'm prioritizing pro-active personal health management. I am totally behind the initiatives for getting health records in shape and making health information shareable.

But one of the unfortunate off-shoots of making data accessible, is that it's vulnerable to corruption and hijacking. A mal-formed database can end up revealing your personal data to someone you don't want to see it. Or a non-secure system can expose sensitive information that should never be seen by outside eyes. People in vulnerable positions are even more vulnerable, when the stewards of our data are nonchalant about our privacy needs and make light of the need for a thoroughgoing security/privacy policy.

And another one of the unfortunate off-shoots of all the HIT work, is that while it may empower me as a patient of a hospital or PCP, it is predicated on the assumption that I am actively engaged with a hospital or PCP. If I'm not "in the system" what then? What tools do I have to manage my own health on my own, outside the purview of the formal system? And what tools do I have to share the information I wish to share, when I wish to share it?

Will I be empowered only if I'm actively participating in a healthcare system which has not fully cared for me on numerous occasions, and has yet to prove itself as a 100% trustworthy partner in my health and well-being?

These are just some questions I have, and some concerns that nag me. I'm not writing off the whole HIT-iverse, and I'm not disparaging it. I just would like more options and more choices. And if I can't find them "out there" I will come up with my own system(s) that suits me just the way I need them to.

Who's afraid of the health care conscience clause?

Does anyone know the fate of the conscience clause that went into effect on 1/20/09 that allows physicians and other health care workers to refuse to care for/treat people seeking help, based on their own religious beliefs?

Under the rule, workers in health-care settings -- from doctors to janitors -- can refuse to provide services, information or advice to patients on subjects such as contraception, family planning, blood transfusions and even vaccine counseling if they are morally against it.

CNN ran a story on it last February (where I got the above quote), saying White House set to reverse health care conscience clause, but I haven't heard about the fate of the regulation.

I assume that no news is good news -- for the folks who hoped it would be repealed. That news would be not-so-good for the folks who looked to that regulation to protect their beliefs and desire to live their lives and pursue their professions consistent with their faith.

Like combining church and state, mixing faith with professional practice can be a tricky business. On December 16, 2009 a Medical group CEO quits (the) AMA in protest. I can understand why he would do so. The AMA stance was clearly not consistent with his own beliefs, and what choice did he have, really? If you don't agree with your governing body, and you can't change it to be more in line with your beliefs, then it seems the only really honest thing to do, is leave. Apparently a lot of people are doing that, according to the CEO "that AMA's membership has dropped since the 1960s from nearly three of four practicing doctors to closer to one in five."

Which is fine for doctors. But what about the rest of us? What about those of us who are not aware of our doctors' religious beliefs and -- not making any judgments about who's right and who's wrong -- we find out too late that our doctor does not believe in certain procedures that we believe may preserve our health and save our lives? What do we do? Seek out a second opinion, certainly, but how do we find out in advance if the next doctor holds beliefs that are consistent with our own? If we are in need of a procedure that one doctor would do, which might help us, but another doctor would not even remotely entertain (or possibly even discuss) due to their ideals, how do we find out what those ideals are before we enter into a relationship with them? How can we do our due diligence and make sure that we're engaging with a physician who actually can help us?

Now, I'm not here to call people right or wrong, or claim that one belief system is superior to another. I grew up in a very conservative part of the country, and I respect people's rights to believe what is in their hearts. You can't argue with a conversion experience, and people who think that conservative folks can be won over to another side through heady, intellectual reasoning alone, have a rude awakening ahead of them.

But objectively speaking, I prefer to go to a doctor who won't refuse to treat me based on their religious beliefs. I am queer, after all. I live with a woman, and I have been committed to her and our life together since 1992. We are legally married in Massachusetts (not that it makes any difference in Pennsylvania, where I was raised). Our finances and our daily schedules and our very lives are more closely entwined than conjoined twins. You literally cannot affect one of us without affecting the other.

Of course, outside my own circle of like-minded folks, in many parts of this country -- indeed, the world -- my relationship is one of sin and iniquity. It is an affront to God, and to the natural order of things. It is an abomination that some believe will condemn me to eternal hellfire and damnation. Some believe that I have deliberately chosen this life of sin, and that my choice condemns me to eternal separation from God -- unless I confess my sins, vow to change my ways, and take to a strictly straight-and-narrow path of righteousness that leads me to the rewards of eternal life.

And I know from personal experience that in some parts of this country -- and in the world -- there are people who believe that my soul is safer in heaven, after having confessed my sins and changed my ways, than continuing to life in illicit iniquity here on earth. I also know that in the church where I've heard it said out loud, "I would rather my child be dead, than be homosexual, because at least then I would know they were with God," there were doctors who attended that church, some of them quite devout.

Now, I'm not here to say who's right and who's wrong. I'm not here to criticize, but to observe. What people believe, and why, is one of the great mysteries in life, and it's not my place to judge others for their strongly held beliefs. But when I go to the doctor - whether I agree with them or not - it's my hope that I will have access to the type of care I am seeking. And it's my hope that they will do everything in their power to help keep me alive.

Now, I don't expect health care providers to utterly abandon their beliefs in the process of helping me. I would never ask someone to willingly violate their own principles. But I do want to know if my beliefs are consistent with theirs, and whether we have the same medical perspectives and priorities. People's beliefs can run very deep -- and very hot. And if you aren't aware that your doctor harbors grave misgivings about helping you continue to stay healthy and whole, because they don't believe that you are doing God's will in your life and you're better off in heaven than staying in sin on earth -- or they deny you access to a procedure you desire because they don't believe in it -- well, then it gets problematic.

As with many issues with me, this is a data issue. There are lots of doctors in the world, and there are lots of different ways of understanding why we're here and what we're supposed to do with ourselves. And for every person who doesn't agree with me or has grave misgivings about helping me, there is surely someone else who does agree with me, and who has no hesitations about providing me with certain types of care. The trick is finding them. Maybe there's a great database in existence, containing details on doctors' and other health care providers' religious beliefs, a list of what they will and will not do in the line of helping their patients. Maybe there's a vast info warehouse that holds details on the ideologies of everyone who's in the care-providing chain -- from doctors to janitors -- so folks on the margins of mainstream or with alternative religious beliefs, as well as smack-dab in the middle of the range of popular acceptability, can decide whether or not to seek care from a certain physician or a certain hospital. But I'm not sure there is.

I wish there were, though. I wish there were some data repository where I could locate docs who are "friendly" to me -- as well as the ones who are not sympathetic with me for religious reasons. I wish there were some place I go to could find out if the hospital I might be admitted at has nurses or janitors or lab techs who have the job of helping someone like me, might have some reason not to. I wish there were a database I could simply query to find a doctor who has no moral qualms about keeping me alive AND who is open to me being an ePatient -- using email and social networking and trusted online resources to better manage my own care.

I'm not trying to be discriminatory in a negative sense, but in a positive sense. Freedom requires responsibility, and what better way to foster responsibility, than by giving both caregivers and patients access to each others' ideological profiles? I am genuinely interested in ensuring that people of all faiths and outlooks have access to quality care that is consistent with their world view and values. I'm also genuinely interested in ensuring that doctors who walk a path of faith and who take that faith very seriously are able to practice medicine in a way that is consistent with their spiritual values. There are an awful lot of doctors in the world, with a variety of ideals and values. And there are many, many different patients with a wide range of beliefs. We just need to find each other more easily.

From where I'm sitting, the problem is not whether doctors and patients are properly regulated/protected or not... it's a matter of whether the right doctors are paired up with the right doctors. And vice versa.

Imagine if there were such a data store that was easily accessed, accurate, up-to-date, and easy to use -- then, at the 11th hour, when so much is on the line, well-paired doctors and patients alike would be able to provide and receive care that is consistent with both their needs and their consciences. They wouldn't have to have all sorts of extraneous (and possibly unnecessary) ideological dramas and crises over life-and-death issues (which are of course never easy to begin with). They could both know that they were dealing with another person who was on the same page as them, who both acknowledged, respected and understood their points of view. And being on the same page could clear away yet more of the anxiety that comes along with healthcare and relying on someone outside yourself for your continued well-being (or possibly death with dignity).

If a doctor or nurse or technician is not going to treat me because they firmly believe that the way I live my life is not in keeping with God's will for humanity, and they also believe that life in the hereafter is far more important than life on this earth, I have no argument with that. I understand many people feel that way, and I don't want to deny them their right to live consistent with their faith.

But at the very least, I want to know about it ahead of time, so I have a fighting chance to stay alive with the help of someone who won't deny me care, based on my "lifestyle choices."