A benefit – and side effect – of Internet culture is an embrace toward access and openness. I can access an abundance of free information on the web. I’ve always embraced open source applications, like the one used to create this website, and will continue to do so as long as it’s available.
However, a potential misconception called “Open Medicine” is a side effect of the Internet culture. I do not believe most people who advocate for “Open Medicine” on the web actually understand what “Open Medicine” really means, and all the ramifications and responsibilities that come with the term. When most speak of “Open Medicine” they refer to the idea that medical information should be freely available, transparent, and credible.
I don’t argue with the concept of making healthcare information available, transparent, and credible. After all, I created www.NakedMedicine.com to provide Accessibility, Honesty, and Integrity in healthcare information.
What I oppose is the misconception built around Open Medicine. In my opinion, here is what Open Medicine is NOT:
Open Medicine is not a blogging network, even if the blogging network is composed of a team of doctors, nurses, scientists, other healthcare “experts”, or anyone who has a burning desire to voice an opinion about a particular healthcare trend or drug.
In considering what Open Medicine really is, we only need to look at the basic definition of “Open” as it relates to this Internet phenomenon:
The basic idea behind open source is very simple: When programmers can read, redistribute, and modify the source code for a piece of software, the software evolves. People improve it, people adapt it, people fix bugs. And this can happen at a speed that, if one is used to the slow pace of conventional software development, seems astonishing. Source: Open Source Initiative.
In other words, Open Medicine can work only when we are allowing access to what is considered proprietary information or intellectual property, for the expressed purpose to enable collaboration to improve and innovate upon this “open” information.
With this definition of Open Medicine, it becomes clear why Open Medicine is not about the surge of activity in medical blogging, nor is it about a perceived emergence in power of the blogosphere. In the Open Source world, developers take the codes and improve upon the codes, then make it freely available to all. Or is it really “free”? Developers certainly have invested their time and intellectual and physical energy on improving the code. What is now free for the consumer was not free for the developers. This was a choice the developers made when engaging in open source.
Along the same lines, to make Open Medicine work, individuals or teams or networks need to go beyond disseminating this information, and act upon what has now become freely available. I’d be interested to see if those most vocal about tying networking blogging to Open Medicine has a plan to create an infrastructure and research funds that would enable those interested to truly engage in Open Medicine to do something with this information, and produce results akin to innovative healthcare products and services.
If not, we need to first stop perpetuating this misconception. We need to then clarify what it is that we as information providers are doing with a repository of information that we’ve collected and are making it available to consumers. Additionally, those of us that provide healthcare information may hold idealistic views of how the consumer can be empowered with transparent and credible healthcare information, but we often forget to qualify these critical questions:
- Transparent according to whom?
- Credible as certified by which governing body?
- Who’s responsible for updating or deleting information that has become obsolete or identified as false and harmful? (and not leaving it up to the consumer to double check with Quackwatch)
Some voices in the blogosphere are openly critical of the pharmaceutical industry, and view their blogging networks as a threat to the pharma industry. I have worked in healthcare. I have worked in the pharmaceutical industry. I have been a patient and have been personally exposed to all the good and the bad in healthcare. My personnel file and public opinions (like my blogs) will prove that I was no corporate yes-man and that I agree with many of the criticisms flying at drug companies’ faces. My concern is not about the pharma industry – it’s big enough and rich enough to take care of itself, just like there are bloggers smart enough and enterprising enough to become marketing consultants for pharma companies if the industry decides to get in on the blogosphere ridea.
What I am concerned about is how the misconception of Open Medicine leads to consumer misinformation and harm. We already have a lot of that on the Internet. By advocating a perception that medical or healthcare blogs would somehow make company-sponsored information generation obsolete is not only shortsighted, it is dangerous. A fatalistic direction may be to see a result similar to what happened with the health supplement industry and ephedra: not regulated by the FDA, and a disclaimer slapped on the label about “this product is not approved by the FDA” was sufficient to get the product on the shelves and into the hands of an unsuspecting consumer.
In the healthcare field, there are ranks of scientific credibility and how much we can actually trust the information that is published in a medical or scientific journal. The rank of most medical blogs and information networks, including www.NakedMedicine.com, is the lowest on the totem pole, a few steps short of being classified as “For Entertainment Purposes Only.” That’s not a typo, and I didn’t mean “Education.”
In fact, I don’t think ranking is even deserved for most healthcare information available for consumers, but if one insists, I’d assign blogs and blogging networks to those of “anecdotes” and “case reports.” Even if a blogger does a comprehensive review of literature, it is at best considered a weak meta-analysis, and still nowhere close to the rigors one would give to quality advice. Blogs by nature are considered “N=1” – one person’s opinion, experiences, and observations.
No drug ever gets approved on a sample size of 1. A doctor may get his anecdote or case report published in a medical journal, but it is clearly labeled as such, and the report usually is pretty damn shocking and needed to get published so more people could look into it (for example, a patient died when no prior deaths had been reported, or experienced a side effect that no one else had seen or known about).
This is not the same as Wikipedia rivaling Encyclopedia Britannica in accuracy of what may be considered objective, factual information. What blogging in the medical and healthcare world is more akin to is the “art” of medicine and science – and with this comes tremendous responsibility in ensuring:
- source information
- disclosure of conflict of interesta
- disclosure of potential blindspotsb and
- assumptions of investigators/researchers/AND SELFc
I don’t see enough self-disclosure of blindspots on many medical information blogs. These disclosures would be statements like, “I may be biased because….” or “These are where my assumptions are, which leads me to draw these conclusions.”
I also wonder how often advocates of Open Medicine as Medical Blogs disclose all of their intentions behind their message. If we apply the same lens to look at network blogging as we would a commercial enterprise, we could see where this may lead, and is already leading. Efforts could be sustained by paid bloggers, who derive a percent of commissions from revenues generated by advertisers. Would these advertisements be scrutinized to ensure against false claims? Perhaps network blogs could start sponsoring continuing medical education (CME) events for physicians, which would relieve some of the perceived hold that pharma industry has on physician education. Or would the networks prefer to channel profits into advertising efforts and gaining more commercial sponsors?
The reality is that consumers go online to get BOTH medical information and advice. We cannot trick ourselves into thinking that all consumers are educated with a masters or doctorate degree, who will question assumptions the way that many of us trained in medicine and the sciences would.
I don’t have a happy conclusion for those advocating Open Medicine and Medical Network Blogging in the same breath. I certainly am not advocating against freedom of information. What I am urging is judicious application of the term Open Medicine. What I am urging is a careful consideration of the responsibilities that come with having an influence over a patient who may be reading our words in hopes of finding some advice, even when we have disclaimed our faces blue about how “these words are not meant to replace the advice of your doctor.”
Disclosures and Footnotes
aI provide consulting and educational services to the pharma industry, in the medical affairs function. I do not provide consulting or advice in blogging or blog-related marketing. I also write a monthly column that teaches pharma sales reps how to communicate information appropriately. If you need to know more about my background and my company, please visit here and here. To read my personal experiences working and quitting in the pharmaceutical industry, please visit here and here.
bFor example, I may have worked in healthcare, but I’m not a physician, and I’ve never treated patients, so I don’t know whether open access to medical information has been mostly harmful and helpful to the patient-doctor relationship.
cI’m assuming that clarifying the definition of Open Medicine from what Medical Network Blogging actually is would be important for the interest of better patient education and consumer empowerment. I don’t have scientific data to support this, so my assumptions are based on personal experiences, interactions from patients and consumers over the past 8 years of operating a mental health website, from observing the explosion of medical information blogs, and from participating in providing health-related information on the web.
By Dr. Robert Lamberts, M.D.
I have always been nervous about the idea of “open medicine.” The uncontrolled mis-information on the internet is something that we physicians battle on a daily basis. The patients who get their information from “ritalin_is_evil.com” regarding the use of stimulant medications and comes to me with concerns is difficult to handle.
The main thing that I am “selling” to my patient is trust. That trust is built upon my time with them and the credibility I have built over time. That trust can be undermined very quickly by a caviler comment by someone on the web (or by Tom Cruise, for that matter). I think it is extremely important to have open access to information, and I do feel that an educated patient is better overall for the care I can offer. This is only true, however, if the information I am offering is good information and it will be reinforced by good information off of the Internet. If I give bad information, then the patient with good information is well-served, and the patient getting bad information off of the Internet is no worse served. If, however, I give good information the Internet can only do harm – it can’t really help the patient get better information.
I think that there is some value even in the mis-information of some of the websites out there in that it does get patients engaged in the process of care, but they need somewhere that can adjudicate the difference between their doctor’s opinion and that of the websites they visit. That is the value of sites with the integrity of nakedmedicine.com.
So what is “open medicine?” Open medicine, in its good sense, is medicine that allows for contributions beyond the “ivory towers” and includes the rank and file of medicine. It gives accountability to the mis-information of Pharma (which is not a given, but it definitely happens at times). Open medicine takes science for what it is – a flow of evidence, both for and against ideas. The amalgam of those ideas constitutes the current scientific opinion (or at least it should). If there is contradiction in open medicine, it is OK – that is what science allows – seeming contradictory facts which will be resolved with further evidence. This needs to be clearly understood.
Do I welcome “open medicine?” Yes, when it is done well. I have to admit that I am a blogger, and that my blogs are not always held to scientific fact as they should be. I never mind the challenge – in fact I see it as part of my educational process. I really think that medical “consumers” have to do what most patients of mine do – they need to look at my overall performance giving information and trust me more if I am right more often. The key is to know where to go for reliable information and to hold it up to what you are reading (or hearing). Where to get that information? From sites like nakedmedicine.com.