APIs will save us all one day

The New York Times released its API for campaign finance a week or so ago. It has been the in thing for a while. I wouldn’t say everyone has entered the era of Big Data yet, but organizations are definitely seeing the value of opening their doors for people to build something even greater with their data and services.

It is a shame that health care is not nearly technologically evolved enough to take that path also. I imagine a future where doctors’ professional records are fully transparent to the public through PUSH APIs providing treatment data to various web services/communities. There is huge value in health professional data, but you can’t just wish an effective health care IT system into existence with some laws and government money. It needs to be grown organically through repeated cycles of innovation.

I spoke recently with several people about personal health records’ importance to the demand for health care IT. I believe in a few years personal health records will become mainstream and drive doctors to adopt digital records and others to innovate.

In the future, open medical data will improve care through greater accountability, and increase the public’s understanding and awareness. More than one person has observed that abundant data has the potential to change the way we make conclusions. Better decisions become cheaper and cheaper. Freely accessible data has the potential to eliminate ethical dilemmas in drug testing and lower costs in post approval clinical pharmaceutical trials by changing the way studies are conducted. I am excited about opportunities to apply medical data for public benefit.

The hypocrisy of the modern doctor

I recently commented on another blog (see commenter Wustl07) about privacy and the dangers of imbalances in disclosure. There are still a few people who still wrongly disagree with my perspective, and although I will admit my viewpoint is highly idealistic, that does not mean its value should be dismissed.

Health care in particular is still an area where huge asymmetries in disclosure exist. Medical knowledge, and especially doctors’ professional information still remain bottled up away from the public, and without full transparency, the forces of accountability are unable to drive the profession to fulfill its responsibility to the people. The patient offers up a detailed history and transparency, but where is the doctor’s “professional history?” In the relative absence of real evaluations for continued competency this is an even bigger deal (don’t judge this link by its title, it discusses an interesting solution).

The “profession” in its arrogance still believes that the public is far too ignorant to comprehend medical knowledge and make educated choices (if that is the case, it is because we have done a poor job sharing our knowledge with the people). Plenty of “ethicals” make that argument while speaking about a patient’s right to autonomy and informed consent out of the other side of their mouth. They do not understand that without transparency, you can achieve little more than the illusion of choice.

Imbalances in disclosure is not just detrimental to the public; in the long run this will also have a negative effect for doctors. We are starting to see it already. The autonomy of health care professionals, allowing freedom to treat and care for patients in the best manner possible, is derived from public permission. Without the trust and permission of the public we begin to see greater involvement of insurance companies, and government in the profession (both of whom have even less accountability and transparency) and an erosion of professional autonomy. Ask your friendly neighborhood physician who has been calling the shots in medicine lately?

I want to expand the current discussion on intellectual property rights in medicine, and transparency in health care. Leave a comment (don’t be an anonymous coward), or chat it up with me if I am logged in on Meebo. That way everyone can see and address all sides of the issue, and maybe I can win some hearts and minds while I am at it

Standard of Care

The “standard of care” is among the most pretentious and misused gimmicks in health care, and I would like to see those words eliminated entirely from the diction of my colleagues.

I ran a search for “standard of care definition.” Let’s see what our highest ranking page has to say about the standard of care…..

Standard of care:

1. A diagnostic and treatment process that a clinician should follow for a certain type of patient, illness, or clinical circumstance. Adjuvant chemotherapy for lung cancer is “a new standard of care, but not necessarily the only standard of care.” (New England Journal of Medicine, 2004)

2. In legal terms, the level at which the average, prudent provider in a given community would practice. It is how similarly qualified practitioners would have managed the patient’s care under the same or similar circumstances. The medical malpractice plaintiff must establish the appropriate standard of care and demonstrate that the standard of care has been breached.

The standard of care is not a concrete concept with a singular interpretation, yet many people continue to employ it as though it were. It is a poor abstraction of the logic of average practitioners that can only actually be applied inside a courtroom. Outside the courthouse, it is nothing more than a legal bogeyman, and has absolutely no place dictating care.

Clinical decisions should rely on a knowledge of the literature, your materials, and a history of clinical experiences. Anyone who enacts real clinical judgment sees the standard of care for what it really is, a pathetic euphemism for a cookbook style approach to health care that is accepted by average doctors who lack the desire to achieve excellence in their field.

Changing of the guard

The evolution of social networks has driven content creation forward, and we have been seeing a transition away from traditional media towards the more abundant and more creative content on the web. I am waiting for the other shoe to drop, on traditional enterprise software.

I have become more and more involved in my future job at my father’s office as I get closer to an Orthodontic residency. What I have begun to notice is that nearly all of the available software tools for the enterprise have created a walled garden for their data and code. The software available to health care professionals probably includes some of the worst offenders of this closed door policy.

The software currently managing the office utilizes the SCO group’s version of Unix. It is over priced, closed sourced, it offers no ability for other programs to interface with my data, and as part of the EUL I can’t really even call my data my data unless I am pay a software engineer to fish it out for me first.

Cloud computing has become a popular buzzword lately, but I don’t think enterprises are really looking for just a move to the cloud. They want and need to change their software society. The standards for web apps are so vastly different than those currently employed in niche professional software. Web apps provide truly portable data, provide ready access to APIs, are devoid of the administrative debris seen in desktop applications, and empower people to do so much more.

The choice between the two cultures is obvious, but there still are too many obstacles currently holding many back. From my end of the spectrum…..Internet connectivity is not the same everywhere and health care data especially is bulky and difficult to transfer. Doctors are short on time and can’t spend it as early adopters patching together a reliable system from many different untested web based apps. The current programs are feature rich and have tools to handle patient education, specialized imaging, etc. Then on top of everything there is the cost of retrieving your data out of the current system, which really isn’t the major factor but all the same it doesn’t help.

At some point there is going to be enough legacy open source code to bring the freedom to the health care arena, but it is still a ways away. Right now IBM and Microsoft have begun to devote their increased attention to health care IT, so hopefully the open source community can swell up in the wake of the new direction they are taking.

Update: I like the way this post phrases things much better than my own wording on the direction that software needs to go. Specialization of software down to the core competencies of small software companies will create better products and open standards will enable the market. SaaS is a better, freer model.