Wednesday, December 28, 2011

Working couple of years back in the symptoms of my own illness at the time, I missed many tools that I would have certainly loved to have to find the data I needed, specially when one thinks in the times of the Internet: Free access to journal papers (of research partially paid by MY taxes), forums with good tools to search/screen through the answers, good symptoms search tools, tools to track my symptoms and any other factors and see how those correlated to my evolution or that of other similar patients, etc...

Eventually I managed to cure myself (after repeated failures of my PCP), by covering with ingenuity and hard work for some of the lack of those tools, and along the way, I thought it would be good to create those tools for many other patients. This may look like a very altruistic/philanthropic goal, but ultimately, let's be honest, I or somebody I care about would be benefiting from it in the long run, when illness strikes again.

So, while I was cooking some of those tools/sites, I failed to find a site called, till my friend, just yesterday, mentioned it to me. I was hit again by the "duh, I am late again" feeling, but at the same time, I thought that better that somebody does something instead of me thinking about it. I even looked at it with more sympathy when I read about the story of the founder, who came up with this project while fighting his brother's ALS. More here:

So, just signed up and here are just quick thoughts, not so much on the tools/interface/etc (where I do have my opinions) but on the spirit of the site. Honestly, I am a bit disappointed. They do say up front (good that they don't hide that) that they are a for-profit organization. Question is at what expense, if any. Their first core value is: "putting patients first". That sounds exactly what I would have in mind for mine, so, great! So, they don't sacrifice the advance of science, a cure for those patients, etc... in order to make money, right? Errrrr... Well, not really. That's actually not what they mean for that sentence and the detailed explanation can be found here:

"Simply stated, this means "Patients First."  You, our patients, trust us with your most valued health information. We honor that trust, and we are dedicated to advancing the knowledge of your conditions with the information you share."

Not bad, but will they give it 100%? Not really. An example of it can be seen in their research policy:

One of their assets is their patients. Yes! Patients are an asset to them. The information patients disclose is an asset too. And will no offer it for free to everybody out there. It is not about protecting patient privacy. They actually will sell it to the buyer. It is about protecting their pockets. If a professor doing a study in MS would like to run a short questionnaire or few test through 100 patients to further advance his research, he can't do that, without permission AND payment: "Please note that we do not have a patient referral service which is free of charge".

Anyhow, do not want to be too harsh on the site. I want to check few more things and I also understand that sites require money to run. Money brings also quality. But "for profit" is just not what I had in mind in this case... I got to think what I would do instead, though... I'll leave for another post thoughts on healthcare financing, but so I am not misunderstood, I do not necessarily look down on anybody that with the current society makes as much money as possible out of sick people... although I do hope for a change in society.

No comments:

Post a Comment