A friend sent me a YouTube video about a doctor who was interviewed on NBC News with Brian Williams which made me aware of Eric Topol, who wrote a book, The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care, which started a search about what this genius is saying about the digital revolution and medicine, and how the RRDi is on the forefront of this with rosacea.
If you are intrigued with what Dr. Topol is saying, as I was, you will be interested in an interview Dr. Topol had with J. Craig Ventor, Ph.D., on MedScape (Dr. Topol happens to be the Editor-in-Chief of Medscape).
Watching the above video will help you understand how important it is for rosacea sufferers to collaborate together. The nutshell version of the interview is that we are on the verge of a revolution in medicine due to the digital information age. Patients need to understand that medicine using the archaic information that is rarely shared by physicians and medical institutions, and is also rarely shared with the patients themselves causes not only waste with expenditures on needless treatments but a huge waste with research dollars. Also, treatment should be focused on the individual patient's signs/symptoms/data rather than on treatment aimed at a mass of patients with the same symptoms. That is what digital information is about; focused on the individual patient with treatment focused for that patient only. And rosacea sufferers should come together and gather as much information as possible and digitize and categorize it to help each other, by sharing information, pooling information together into one organization such as the RRDi.
This brings us to why the RRDi was formed in the first place. If you aren't aware of why and how this organization was formed you should read this post to understand that current rosacea research is paltry compared to other skin diseases and how the current expenditure on rosacea research needs to be improved. For example, according to Michael Detmar, M.D., in 2003, only one paper was published for every 144,000 rosacea patients in the United States, compared to a 1-to-11 ratio for melanoma and 1 to 4,900 for psoriasis.
This organization was formed in 2004 and is a legally established 501 c 3 non profit which is no small feat in itself. Trying to form a non profit organization for rosacea and the hoops you have to go through is no small feat to accomplish. However, the internet makes forming a non profit easier if you are tech savy and Google has made it easier. If you read the link above on why and how this organization was formed because the current spending on rosacea research could be better spent you will agree that rosacea suffers who volunteer and ban together can direct the spending better than an organization who spends 60% of its donations on private contractors owned by the director of the non profit. That is why the rules of this organization prohibit such a conflict.
Dr. Topol gave a lecture sponsored by Google Health:
The above is a long lecture worth watching. You will understand a lot about the human genome and why digitizing your personal sequencing can unlock data which can be used to treat your individual health issues. Patients who ban together with the same disease can have an impact not only with themselves, with better treatment, but also influence physicians, the medical community as a whole, pharmaceutical giants, and learn how the NIH sponsors research. In the lecture Dr. Topol mentions how the AMA wants to keep doctors patient notes and other patient medical information only available to physicians. This is not the direction that digital medical information should go. Rosacea sufferers need to make it clear to their physicians that such information belongs to the patient with access for the patient's personal use. Gathering patient data about yourself is what treatment needs to be focused on rather than on a mass of rosacea patient data because what works for one rosacea sufferer may not work for another. More data means more possibilities of treatment.
The RRDi is way ahead of all other non profits for rosacea in the digital revolution of medicine. As of this date we have over 1000 members who are ready and willing to collaborate with each other in a forum (but who as of this date rarely post and are probably not aware of how to collaborate better). We have 45 medical professionals who have agreed to volunteer and answer questions in the RRDi MAC. The RRDi published its first journal in 2010. All this was done with volunteers. All the funds are spent on keeping this going. No private contractors. No salaries. All done through the efforts of rosacea sufferers who volunteer to make it happen along with the 45 medical professionals who have graciously volunteered for our non profit.
G SUITE FOR NON PROFITS
How can we move forward? We need more collaboration. Google has provide us with the tools to do this by donating G SUITE for Non Profits (formerly Google Apps for Non Profits). A member of the RRDi can avail themselves of a free G Suite account that allows each member to not only collaborate with fellow rosacea sufferers but also with the 45 medical professionals serving on the RRDi MAC who also have accounts. If you are not aware of the powerful collaborating tools available with Google Apps watch this short video:
Google Apps for Work Education Version
Watch what a couple of non profits did using the collaborative tools of Google Apps donated to their organizations:
Most RRDi members are not using these powerful collaborative tools available free for the use. Of the RRDi MAC members only a handful have accepted their free RRDi Google Apps account. You could use these tools as well if one has the volunteer spirit. If you have read all this can you agree to join and volunteer?
What you can do is not only join this non profit organization made up of volunteer rosacea sufferers but also accept a G Suite account and help out. With enough members who volunteer we can improve this non profit organization so that it has a powerful influence not only on rosacea sufferers but also the medical community as a whole who should collaborate better about rosacea. The RRDi is here and you can contribute if you have the volunteer spirit.
Edited by Brady Barrows