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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,...

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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...

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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.”...

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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...

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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...

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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

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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. 

Health2Social patient empowerment tool launching soon!

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

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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

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

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

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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!

Smartphones and Healthcare: Patients Benefit, But Who Has the Most to Lose From mHealth Innovations?

Posted on : 08-02-2012 | By : Akiva Zablocki | In : Health, mHealth, New Tech

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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.” The piece, by Adam Bluestein, is a survey of the new disruptive innovations in the mHealth market that can potentially replace large, clunky, and expensive medical devices with small, elegant, and low-cost Smartphone accessories. The article touches briefly on one of the main challenges mHealth faces as it aims to grow its chunk of the $273 billion medical device industry from its current $2 billion market share.  As mentioned in the article: “At stake is the future of health care–and a share of the $273 billion medical-device industry, which is dominated by the likes of GE and Philips.” What is obvious here is that GE and Philips will not be happy with disruption from the startups which have the potential to replace their high cost devices. One of the biggest setbacks for innovation would be if these larger companies use their millions in cash reserve to lobby Congress to create more regulations that can potentially stall the influx of these new cheaper devices. As Bluestein discusses in the article, the “clunky-looking device eye doctors use to pinpoint your prescription–weighs about 40 pounds, costs $10,000” – and can be replaced by a similar functioning $30 accessory that can attach to your iPhone.

Two other forces that can potentially prevent this disruptive market from developing and benefiting consumers are healthcare providers (i.e., hospitals, medical centers and large practices) and outdated laws and regulations.  Hospitals spend millions of dollars on advanced diagnostic and treatment devices. These hospitals need to recoup the costs by charging consumers (patients) to use these devices. It can take many years to pay off a new MRI or radiation machine and hospitals need the physicians to continue ordering the tests and treatments. I doubt we will see small MRI or radiation iPhone add-ons anytime soon, but the general rule applies to all the high-cost medical devices. Recently there has been a lot of discussion about the Medical Arms Race going on between hospitals who all want a $150M proton beam therapy machine. Despite the fact that this machine provides only a marginal benefit for most patients, as soon as one hospital buys a machine, all the others in the city feel the need to buy one as well in order to remain competitive. This leads to years of more expensive bills for patients, with only marginal better outcomes. Hospitals will have a lot to lose if new innovative devices bypass the need for their high cost devices. Simply put, if a patient can spend $50 at home instead of $1000 at the hospital, the hospital is going to need to a new way to pay their bills. For this reason, it is likely that hospitals will be at the forefront of lobbying efforts to discredit these new, cheap, innovative devices. Additionally, there might be an issue of reimbursement for physician’s time as office visit payments are reduced when patients no longer need to come in for various test.

Lastly, outdated HIPAA laws could prevent a lot of the usefulness of these new mHealth Smartphone accessories. It will be an amazing achievement in medical science when a patient with a heart problem can buy a $30 hearth monitor accessory and monitor their heart from home.  However, getting that data back to the physician will turn out to be tricky. With the current laws, a physician might have to ask the patient to print the data and fax (yes, fax!) the data over to the physician’s office.  This is because HIPAA requires secure methods of transferring medical information, and most intuitive ways of connecting patients to doctors are not secure enough (i.e., email).

While these new innovations are a blessing, and the disruptive result can be a benefit to all healthcare consumers, there is much need to do more on the regulatory side to assist these innovations. HIPAA needs to be updated and reformed, taking into account new technologies as well as societal changes (like social media) as well as making sure the potential losses for the big companies and medical centers) do not prevent these innovations from coming to market.

What mHealth innovation would you like to see coming to your Smartphone soon?

3 Ways to Increase Your Fan Engagement on Facebook:

Posted on : 21-11-2011 | By : Akiva Zablocki | In : Social Media

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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 1 click per 1000 fans. Facebook’s recent changes in their algorithms reward page posts with more engagement by giving those posts more views in your fans’ feeds. Here are 3 easy ways to create more engaging posts:

1) Avoid text only posts and posts longer then 140 characters.

- Photos posts on Facebook get the most attention followed by clips and links. Stay away from text only posts or posting links/photos with no added comments/text.

2) Aim to create engagement with you post, not just likes:

- Recently, social monitoring service EdgeRank Checker, found that Comments 4X More Valuable Than Likes. Your goal should be to encourage fans to comment on your page post by creating engaging & visible content.

- Remember to use the correct posting option on your page. Use link or photo first, and then add the call to action. Never add a link or post a picture without a clear call to action.  Your fans will most likely ignore it.

3) Focus on creating sharable content that your fans will want to share on their profiles.

- EdgeRank states that “Current popular objects that are being Shared are funny and/or entertaining images or videos. The trick is to get the fan to “share” this photo/video/etc with their friends. Make the photo/video/etc something their friends would actually want to see.”

What best practices have you found to work to get more engagement from your fans?

myMediConnect PHR Service Launches Enhanced Wellness Tracker, but Where’s the Social?

Posted on : 06-12-2010 | By : Akiva Zablocki | In : Medical Records, PHR, Social Media

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myMediConnect, one of the four personal health record (PHR) systems chosen by the Obama administration for the Medicare PHR Choice pilot program has launched a new Enhanced Wellness Tracker an Online Dietician and Personal Trainer. We have mentioned in the past our view of PHR’s and the simple use of DropBox as a ad-hoc PHR, but the service offered by myMediConnect is a lot more comprehensive and sophisticated. According to the Business Wire press release, the new tracker will enable “users to easily create and track custom fitness and diet plans, as well as take advantage of a large library of meal plans created by professional dieticians.”

While I do appreciate the use of YouTube for a “fun company video about how difficult it can be to get medical records” it would be nice to see other use of social networking in myMediConnect.

Dietary trackers of these sorts are not new, and have been popping up in different PHR services over the last few years. Livestrong.com has had a popular wellness, diet, and exercise tracker service since 2008 that can also sync to your Google Health PHR account. While the idea of a meal plan offered by myMediConnect is great and will no doubt help Medicare PHR Choice users meet their dietary goals, there is a stunning lack of social networking capabilities in this service. Amy Rees Anderson, CEO of MediConnect Global states: “The wellness tracker gives consumers the ability to take even more control of their own healthcare by empowering them with the tools to take a more proactive approach to their wellness in a completely secure and private setting.” More control is great, and has been correlated to enhanced health outcomes, as originally shown in the 1967 Whitehall Study in London. Still, the ability to share meal plans, link to your social networks, and even “compete” with friends on dietary goals and exercises are fast becoming a standard.

This new enhancement for myMediConnect PHR service is a welcomed addition to an already comprehensive, yet simple to use, PHR system. I hope that with the next enhancement to myMediConnect we will see more social interactions, allowing us to share and view meal and exercise plans, while still keeping the strict privacy controls on our personal health records.

Are all New Healthcare Technology Initiatives Social Media?

Posted on : 01-11-2010 | By : Akiva Zablocki | In : New Tech, Social Media

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There seems to be some confusion between the idea of social media in healthcare and new positive advances in healthcare technology initiatives. Last week the Healthcare Performance Management Institute (HPMI) published a white paper titled:  Healthcare Performance Management in the Era of “Twitter” in which the HPMI described several advances in uses of technology and health data to foster communication between patients and their physicians to achieve better healthcare outcomes.  The published paper was covered in an InformationWeek article titled “Social Media Cuts Healthcare Costs,” and was presented in a way that one would think that patients posting pictures on Facebook can actually save lives.

The paper indicates that last year the Pew Research Center found that 61% of Americans turn to the internet for health information, which is not exactly big news. The HPMI paper goes on to describe an initiative called Point to Point (P2P) Healthcare solution offered by Healthcare Interactive and WellNet Healthcare as a “technology that combines a repository for storing and analyzing medical and pharmacy data with an online social network that links a company’s employees with all of their care providers. “ This initiative sounds really great and will likely advance health outcomes and cut costs. However, it does not sound like more than a comprehensive disease management program—hardly a social network. The name itself “Point to Point (P2P)” hints at direct interactions rather than a social one.

Are we “Unraveling Why Patients Don’t Take Their Meds?”

Posted on : 29-09-2010 | By : iPatchman | In : medication adherence

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A recent WSJ Health Blog post titled “Unraveling Why Patients Don’t Take Their Meds? argues that one reason patients stop taking their medications is the negative side effects they may experience. The post mentions some astonishing reasons for the lack of drug compliance. The blog mentioned that a recent study by the New England Healthcare Institute (NEHI), which brought together experts on patient medication adherence found that “there are many reasons besides side effects that patients don’t take their medicine: cost, the challenge of managing multiple prescriptions, cultural issues, forgetfulness and a reduced sense of urgency if they don’t feel any symptoms.” The article also mentioned that “an estimated one half to one-third of Americans don’t take their medications as prescribed by their doctors . . . contributing to about $290 billion a year in avoidable medical spending including excess hospitalizations.”

I find this quite amazing to believe. I agree that negative side effects may be the main reason patients stop their medications, but this, and the other reasons listed seem to be only dwarfed by

Is “Allowing” Patients to Read Doctors’ Notes a Right or a Privilege?

Posted on : 28-07-2010 | By : Akiva Zablocki | In : Health, Medical Records, PHR, Social Media

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There has been a lot of debate this month around patients’ access to physician notes. The debate began after the Robert Wood Johnson Foundation (RWJF) announced the funding of a year-long study called OpenNotes. According to Reuters, patients would be able to “look over the notes from a home computer and share them with family and friends if they choose.” After one year the researchers will study the patients’ and doctors’ experiences and try to gauge whether patients want to continue having access to their notes online, and whether doctors want to continue granting that access. There is a real fear that patients will misunderstand the shorthand and medical terms in the notes, as well as create more work for the physician when the patients call in or email concerned or misguided.

Both the Wall Street Journal and the New York Times ran articles on OpenNotes, debating the pros and cons of doctors granting ease of access to their notes online. I emphasize ease of access since, as WSJ eloquently states, “patients have a legal right to see their entire medical record including doctor’s notes,” with an exception of psychiatric notes, which is up to the physician’s judgment.  There is little doubt that one of the most significant changes made by

Using DropBox as your Personal Health Record (PHR)

Posted on : 19-07-2010 | By : iPatchman | In : Health Hacks, New Tech, PHR

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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 and backing up your photos, to “15 Awesome Dropbox Tips and Tricks,” DropBox has found many uses for the free 2GB of cloud storage.  One new use that is emerging is that of a Personal Health Record, or PHR. The Obama administration is investing billions in electronic health records and many startup companies are hoping to get part of that stimulus by creating PHR and other electronic health records (HER) systems. Google, Microsoft and Dossia have emerged as leaders in the PHR/HER arena with their Google Health and Microsoft HealthVault. These tools synch with many other online health sites like Livestrong’s Calorie and workout tracker or your local pharmacy. However, you still have to spend the time scanning and uploading doctors’ notes and test results into your online account.

Personally I feel that if I am already scanning all paper notes and test results into my computer, I want to have more direct and personal control over them. With DropBox I can easily place all PDF versions of my medical records into folders for each provider.