Featured Posts

The Power of Social Healthcare; Becoming an Empowered... The following guest post was written by Lisanne St Onge Klute, a courageous women, who, in the face of a dire medical prognosis, chose to become an empowered patient and,...

Readmore

Step One to Making an Informed Healthcare Decision:... Originally posted on iPatchman.com  On May 30th 2008, a dozen brain tumor experts from over six different medical centers convened in Boston to discuss one patient’s...

Readmore

Smartphones and Healthcare: Patients Benefit, But Who... In Fast Company Magazine’s February issue there is article titled “As Smartphones Get Smarter, You May Get Healthier: How mHealth Can Bring Cheaper Health Care To All.”...

Readmore

3 Ways to Increase Your Fan Engagement on Facebook: Measuring RIO from your brand’s social media presence is no easy task. For the larger brand pages, research has shown that they have a click rate of 0.14% or around...

Readmore

Using DropBox as your Personal Health Record (PHR) Much has been said about the amazing new uses one can find for their DropBox. From setting yourself free from the risk of losing your USB thumb drive and effortlessly syncing...

Readmore

Health2Social Rss

The Power of Social Healthcare; Becoming an Empowered Patient and Surviving a Cavernous Malformation of the Brainstem

Posted on : 05-06-2013 | By : admin | In : Uncategorized

0

The following guest post was written by Lisanne St Onge Klute, a courageous women, who, in the face of a dire medical prognosis, chose to become an empowered patient and, with the help of social media, found the best possible treatment. It is a story of the power of social healthcare and the importance becoming an informed e-Patient as well as sharing one’s story. This post was originally featured on the iPatchman blog. 

In May of last year, I found out I had a Cavernous Malformation in the brainstem and it was bleeding, slowly disabling me. I was told by numerous neurosurgeons that it was inoperable. I went online right away and looked for support. I came across a support group where I met so many kind people, but nobody with the same condition as me, in the same location. I did learn from them to become pro-active in my health, to do more research.

One thing led to another and as my health was deteriorating and I felt myself literally hanging by a thread, I was desperately feeling alone. I had found stories of people who have had the surgery that would save my life, but they had lost all quality of life. In the meantime, one of my friends had found Dr. Robert Spetzler as one of if not the best neurosurgeons in the country, who is not afraid of operating in the brainstem. I sent him my MRI scans and he called back with a surgery offer. I was not expecting that. It was a very hard decision because to have the surgery, or not to have it, he could not tell me that one choice was better than the other. It was a damned if you do damned if you don’t. To not have the surgery meant that I could die or become severely disabled any day, and to have it meant that it would most likely save my life, but I would have deficits and a strong chance of being disabled now.

I needed more than ever to find someone, if only one person, that had been through this surgery. I kept searching, I kept not finding… but one night, I typed in Google a series of words I have not before. I don’t remember exactly what order of words I used, but it was something like “successful brainstem cavernous malformation surgery.” I stumbled on Akiva’s story (AKA iPatchman), I went back to his first post and discovered he had surgery in the same location of the brain as me! Not only that, but he also had Dr. Spetzler!! I was happily shocked when he shared that he was recovering and seemed to have a pretty normal quality of life. I sent a message to his iPatchman Facebook Page to both ask about his surgery/recovery, and to ask about Dr.Spetzler.

Before I even got his response, to make a long story short, I ended up in the hospital after having a worse bleed than the ones before. I now knew for sure that I needed the surgery, even if I had already decided it was best as a mother to ensure that I was going to be alive for my children, even if that meant i was going to be disabled. I was in the hospital when Akiva got my message and answered. He right away offered to call and I was amazed at the timing. I don’t think he knew at the time how desperate for answers I was. He was such an encouragement not only to me, but to my husband, and friends. Talking to him and hearing what he had to say gave me a lot of peace about my decision, and the fact that he had the same surgeon as me was just phenomenal to me. It really gave me so much hope at a time that I was made to believe I was going to either die or become a vegetable in the next week or so. He had had successful brainstem surgery and was ok, and it gave me more hope in one day than I have had in a year. It’s a beautiful thing.

Since then, I had the surgery, and I am still recovering, but I can walk, and I may not be able to work yet, but I know some day I will. I might go back to school. I have life goals and plans again. To have had a second chance like this was a feeling that I knew few people get. I also was contacted by 3 different young women that, like me, were desperately looking for someone. I know that reading the iPatchman blog encouraged them too. By letting me reach out to him, iPatchman made it possible for others to reach out as well, and it is amazing how many more people with “inoperable” cavernous malformation I know now, while I was all alone at first. Recently, Akiva told me, “Sometimes I feel like the reason we got so lucky, and were saved in the first place, is to help others,” and he is right. I truly admire that he went through this at a time when he was alone and came out so strong and positive, but by him sharing his journey, he made it so others are not going to be alone. It is like building an army. An army of fighters.

Follow Lisanne’s story on her Facebook Page: That Brain Fart. If you know anyone that was affected by a brain tumor  or a cavernous malformation please share this with them. 

Share

Health2Social patient empowerment tool launching soon!

Posted on : 17-07-2012 | By : admin | In : Uncategorized

0

We are proud to announce that our team is working on launching a new Health2Social platform soon. Check back here for our revamped site.

Health2Social is developing tools to empower patients to make better decisions about cancer treatments. We are working on creating a unique social networking technology that will equip patients with the tools they need to make an informed decision by sharing and reviewing personal treatment experiences and comparing treatment ratings.

Stay updated by filling out this form and following us on Facebook and Twitter

Share

Step One to Making an Informed Healthcare Decision: Convene an Expert Panel

Posted on : 13-03-2012 | By : Akiva Zablocki | In : Uncategorized

0

Originally posted on iPatchman.com 

On May 30th 2008, a dozen brain tumor experts from over six different medical centers convened in Boston to discuss one patient’s treatment options. The patient, a 76 year-old man, had been diagnosed with a Glioblastoma Multiforme brain tumor, the “most common and most aggressive malignant primary brain tumor in humans.” What was astonishing here, according to NY Times writer, Laurence Altman, was this man’s ability “to summon noted consultants to learn about the latest therapy and research findings” – despite this being the most common brain tumor that has a relatively set course of treatment.

This man was able to solicit advice that anyone else diagnosed with incurable cancer could only dream of. How did he achieve this? Well, this man was Edward Moore Kennedy, or, to his friends, “Ted.”  As the NY Times stated:the ability of a powerful patient — in this case, a scion of a legendary political family and the chairman of the Senate’s health committee” was extraordinary. This meeting led to Ted Kennedy changing his treatment plan from what Harvard’s prestigious Massachusetts General Hospital advised and opting to have surgery at Duke instead. Kennedy’s ability to seek out more opinions from the leading exports in the field is what led him to extend his life by 15 more months and live long enough to vote for the healthcare reform law he worked half his life to bring about.

When I read this article back in 2008, I was surprised to discover that I knew several of the experts that Kennedy consulted with. In fact, I too had reached out to them to get advice on my “inoperable” brain tumor in 2005. While not rich, famous or politically powerful, I was nonetheless resourceful and sought to make the most informed decision possible before starting treatment. Afterall, if one were to buy a new car, they would probably go online and read dozens of reviews about the cars they were considering. They would probably talk to different people who owned those cars and get their first-hand experience. They would then go to several dealerships and test drive the cars they liked, and, only after all that, would they buy a car. However, for some inexplicable reason, when we are faced with a dire illness and need to make a choice about saving our lives, we are expected to settle for one second opinion? Ted Kennedy did not settle for that and neither should anyone!

Around the same time, another rich and famous person was diagnosed with pancreatic cancer and wanted to do everything he could to stay alive. This man had brought us the iPad and the iPhone and he had the ability to convene the “expert panel” he needed to make his decision on a treatment choice. Once again, a person’s ability to properly face a cancer diagnoses was correlated to his status in society. If Joe Schmo wanted to have a call with the same 12 experts he would be looked at like a crazy person.

Even getting access to reviews of treatments online is difficult. If you Google “iPhone 4s Reviews” you receive over 373,000 results full of reviews of the new gadget. You can find Consumer Reports, YouTube clips and experts all over the world advising you to buy or not buy. But if you Google “stereotactic radiosurgery review” you get only 2,240 hits, none of which will actually help you make your decision.  In a recent NY Times article discussing the lack of online reviews for doctors, the author quotes a spokesman for the American Medial Association as saying, “Anonymous online opinions of physicians should be taken with grain of salt and should not be a patient’s sole source of information when looking for a new physician.” The author also quotes the manger of a review site saying that doctors have told her that “patients aren’t smart enough to figure out whether I’m a good doctor.” With this being the approach of the mainstream medical providers it is not hard to see why only the rich and famous can get the best possible advice from multiple sources.

This situation is simply unacceptable. Everyone and anyone should have full access to a system that allows them to make the best informed decision before consuming healthcare, especially when it is medical care that is needed to save one’s life. There are many organizations approaching the information problem, as it is goes beyond the issue of informed treatment decisions. ClearHealthCosts is trying to bring more transparency to the prices of healthcare while FairCareMD aims at allowing consumers and provider of health to agree on a fair price for treatment. And of course, Health2Social is determined to help people get to the best care they need and make the best informed decision when choosing a treatment course.

Look out for our next post, titled “The Informed Patient:  A Manifesto.” This Manifesto will list the steps and conditions that will lead to everyone having access to the same decision making support Ted Kennedy and Steve Jobs had, and, at the very least, the same that I had, which ultimately saved my life.

What do you think should be included in The Informed Patient: A Manifesto? Leave us a comment and share your voice!

Share