UCLA Center for Inflammatory Bowel Diseases


Recently I was contacted by a member of the UCLA Center for Inflammatory Bowel Diseases on Twitter.  They wanted to do a small guest post.   I felt honored to be approached by such a prestigious center.  Of course I said yes.  For anyone that doesn’t know what UCLA is, it is a very big university in the USA.  The letters stand for University of California – Los Angeles.  The website to the center is here http://www.uclaibd.com. You might have seen articles about the work they did.  Recently they have created some programs to help in communication between doctors and patients, which is what they briefly wanted to write about.  So, without further adieu, here is their guest post.

 

“In its summer 2012 issue, the Crohn’s Advocate did a cover story on how the digital age is transforming patients’ self-management of their disease. “The 21st Century Patient: Managing Crohn’s in a Digital World,” talks about online health management platforms that provide patients with direct access to their health information so that they can take action on it. If you’re as excited about the idea of being actively involved in the management of your health as we are then we’d like to tell you how we think it can work.

Our UCLA Center for Inflammatory Bowel Diseases and Rochester General Health System were the two online health management platforms featured in the Crohn’s Advocate article. Both of our platforms enable your medical teams to capture, store and share information about your health with you electronically and in real-time. Using such systems, you and your medical team are able to track how your health is progressing and adjust treatment and care accordingly with real data to support those decisions. We see this as a big shift in patients’ participation in their own care and where healthcare is heading in the future.

Our Homecare program at the UCLA Center for Inflammatory Diseases provides patients with an online patient care portal that they can access via the iPad or their home computer. One of our goals in the program is to make it as easy as possible for patients to access the portal anywhere and at any time for their health information and to communicate with their care team via email or online chat. Firm believers that our patients are co-owner of the care delivery process, we have developed a program that puts the tools in patients’ hands to manage their own health. Using the online portal, our program participants can access their medication information, clinic visits and lab schedules, answer questionnaires about various aspects of their health, and review resources about Crohn’s disease and ulcerative colitis.  The information provided by our program participants along with test results are continually monitored by our team of inflammatory bowel diseases (IBD) specialists to ensure that treatments are going according to plan and any health concerns are addressed in a timely manner in between office visits so they do not become bigger issues. Our Homecare program also provide support tools for participants to address aspects of their lives that might be affected by their illness such as mental health, work or school and social life.

 We’re excited by a future in which patients can work with their doctors and nurses to actively management their illness and achieve better health. We hope to see systems like ours and Rochester General Health Systems be made available to every patient with Crohn’s disease and ulcerative colitis.”

 

Now normally, I wouldn’t post anything else with a guest post..but I wanted to touch a little on this.  I have actually started using a program similar to what they are talking about, which is also featured in the Crohn’s Advocate article.  I think the direction that the great minds at UCLA Center for IBD are taking  are wonderful and is the wave of the future.  In my advice, if your doctor isn’t using any form of digital platforms then it doesn’t hurt to ask them about it.  If they are part of a big university or hospital then you can ask the head of the dept or even the patient care advocate.  The more we pressure the medical community to be on our side, the more they will help us.

I want to thank Lam Nguyen for the post from UCLA Center for IBD.  Please take the time to look over their site.  You can also follow the center on Twitter at @UCLAibd.  There are also links on their homepage to their facebook page, YouTube page, and other sites.  Feel free to drop them a line and let them know how good a job they are doing for us.

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Follow Friday for Oct 19th


This has been a busy week for me.  Three blogs in one week..wow.  I was going to hold off on this one, but I felt like I wanted to put down what was fresh in my mind.

Last night,  I had the pleasure of being in a focus group for a brand new website.  It is still in its infacy and still trying to improve itself.  But from what I see of it, it will go far.  The website I had the honor to advise on is www.meddik.com.  If you visit this right now, please please please remember that it is still being tested out so if you have problems let them know and give them some time to improve.

The site right now is based on people with Crohn’s, Colitis, and Celiac disease.  But, anyone with any medical condition can go on it.  There are posts from people with these diseases looking for help and advice.  You can ask questions or answer others.  One feature of theirs right now is that everyone for the most part is anonymous.  That was one of the features we discused in the group and this might change.

One good article about this site was written here http://mashable.com/2012/05/29/meddik-video/.   Lauren Hockenson talked with the co-founder Tim Soo and I thought this article best explains the site better than I could.  I got to meet Tim last night and he is a really outgoing overall nice guy.

Now I know there are a lot of sites out there to get info and many more social sites.  What will make this site different and better is that it will kind of work like Google.  It will find results based on your preferences.  You can filter what your needs are and it will find results that are like you and others that are realted in a sense.  Do if you put a filter to look for Crohn’s Disease, it will pull and show you posts for CD.  It will also find ones for IBD, Colitis, etc but …it will let you know how many finds are for your direct filter and how many are sort of related.

So, go check them out and let them know how you like it.  If you really have strong feelings on how to help them, you can email me and I will forward it to them.  Sometimes emails are better than a message on a website.