Engage With Grace

Last month I had the opportunity to watch Alexandra Drane announce Engage With Grace: The One Slide Project at the Health 2.0 Conference in San Francisco. The idea behind the project is to get people to share just ONE slide that helps them and their loved ones talk about having a purposeful end-of-life experience.


Alexandra's talk personally touched me because my family went through a similar experience 30 years ago when I was 12 years old. My mother died at home with cancer in 1978. She had the opportunity to die at home surrounded by her 5 children because both my dad and uncle were her doctors. In the past and today, not all families are given this important choice. The memories I have of my mother's final days 30 years ago are still important to me today.

Last week, Matthew Holt who blogs at The Health Care Blog and Paul Levy, CEO of Beth Israel Deaconess Medical Center in Boston who blogs at Running A Hospital, spread the word to bloggers about a viral campaign (call it a blog rally) to raise awareness by encouraging families to discuss end of life care issues while gathering for the Thanksgiving holiday weekend.

For West Virginia readers who want to learn more about end of life care I recommend checking out the resources provided by the West Virginia Center for End of Life Care. There is also valuable information for health care professionals. Here individuals can find forms for the standard West Virginia Living Will and Medical Power of Attorney. The site also includes information, FAQs, list of West Virginia palliative/hospice providers and other resources.


Engage with Grace from Health 2.0 on Vimeo.

Below is a message being posted today and throughout the Thanksgiving holiday weekend at blogs around the country and the world:
We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.This has real consequences.

73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences. But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide – wherever and whenever they can…at a presentation, at dinner, at their book club. Just One Slide, just five questions. Lets start a global discussion that, until now, most of us haven’t had.
Here is what we are asking you: Download The One Slide and share it at any opportunity – with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started. Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them. Just One Slide, just one goal. Think of the enormous difference we can make together.

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team)

UPDATE: Paul Levy provides a post-rally update thanking those engaging gracefully. There were well over 95 bloggers over the Thanksgiving holiday weekend helping to spread the word.

Blawg Review # 186: Blawgers Are All-A-Twitter

Res Ipsa Blog brings you this week's edition of Blawg Review -- Blawg Review #186. This edition begins with a summary of the raging Twitter Wars and includes a link to a post I did last week discussing some of the legal implications of live tweeting in health care.

Check out this week's edition for the latest law news from around the blogosphere.

Medicare PHR Pilot Project

HealthcareIT News reports on the announcement of a Medicare personal health record (PHR) pilot project that will be made available to Medicare beneficiaries in Arizona and Utah.

The four PHR companies selected out of almost 40 who applied to participate in the pilot are: Google Health, HealthTrio, NoMoreClipboard.com and PassportMD.

The Arizona Republic has more on the pilot project. More background information on CMS's PHR projects.

Tip to iHeathBeat on the article.

UPDATE: Today's iHealthBeat indicates that interoperable PHRs could result in$21B savings per study conducted by Center for Information Technology Leadership. Read the press release and full Value of Personal Health Records report.

The Implications for Live Tweeting Surgery

Yesterday Robert Hendrick, health care disruptor (I mean that in a positive way) and co-founder of change:healthcare, live tweeted his laser ablation surgery at the Surgical Clinic in Nashville. He also tweeted the first installment of his surgery to remove his varicose veins -- Live from the Operating Room.

Robert and his counterpart, Christopher Parks, are all about transparency in health care, especially as it relates to payment issues. This serves as just one more example of their efforts to engage health consumers and create transparency in health care.

Robert's live tweeting during surgery struck me as an interesting application of Twitter and other mobile social networking application. Here are just a few thoughts:
  • A way to keep friends and family updated on your condition, surgery, etc.
  • Useful for others who might be contemplating a particular procedure or surgery to get a real time look at what might be involved. I know someone who is contemplating undergoing the same procedure and plan to share Robert's posts with them.
  • As more and more patients and providers start to document information via social networking avenues - what might this mean during future litigation and discovery? Certainly seeking tweets, historical Facebook updates, etc. might be valuable in either pursuing or defending litigation. What are the rules for lawyers in pursuing such evidence? What might this mean for the companies providing such services as they see more and more subpoenas for information?
For a real time look at surgery tweets check out Twitter Search for the term -- surgery. Interesting stuff. I welcome others thoughts on the topic.

Thanks Robert for making my day for awarding me "best tweet of the procedure." Follow Robert on Twitter at @Robert_Hendrick.

UPDATE (1/18/09): More discussion on live tweeting surgery. This time it is from the provider side and not just the patient tweeting away their surgery. Henry Ford Health System live tweeted a surgical procedure in Detroit to a group of medical professionals at a conference in Las Vegas.

Shel Israel at Global Neighborhood has a great summary/interview with background on the event that will be part of his upcoming book, Twitterville. Bertalan Mesko has provides coverage about the Live Tweeting Surgery at at ScienceRoll. To find all the tweets about the surgery search via Twitter Search for the tag: #twOR.


After seeing the post by Shel I reached out to him and told him this wasn't the first live tweeted surgery. However, it was the first tweeted "from the provider side" -- @HenryFordNews.@Robert_Hendrick still gets the 1st award from the patient side.

UPDATE (1/29/09): Noticed in my Twitter stream today that Rick Sanchez of CNN is live tweeting his knee/meniscus surgery. Another live tweeting patient. In this case, high profile reporter from CNN. Follow Mr. Sanchez's twitter stream at @ricksanchezcnn.

UPDATE (2/17/09): Elizabeth Cohen of CNN (@elizcohenCNN)covers the live tweeting of surgical procedures by hospitals in the article, Surgeons send 'tweets' from operating room. Included with the article is a video detailing the live twittering at Henry Ford Health Systems. You can also follow the tweet stream of the surgery tagged via Twitter as: #hfhor.

UPDATE (5/26/09): mobilehealthnews provides a historic timeline of the most notable examples of live tweeting surgery in a post, Twitter surgery timeline: 8 months of OR Tweets.


Why Is Healthcare So Expensive?

A simplified view of Why is Healthcare So Expensive? from Stay Smart Stay Healthy. Stay Smart Stay Healthy is a Humana new-media venture designed to deliver guidance, and to support awareness and understanding of the healthcare industry.

Our goal is simple: to educate consumers on the healthcare system by removing the usual complexities and replacing them with an informative and engaging series of videos.

Check out their other videos on health care.



Tip from KevinMD.

Predicting Flu Season With Google Flu Trends

Google Flu Trends uses search terms as an indicator of flu activity by state.

According to Google.org Flu Trends the aggregated search data can estimate flu activity in a state up to two weeks faster than traditional systems. The chart comparison with CDC data is impressive at showing the consistency between tracking search terms vs. using influenza surveillance data. Read about how it works and the FAQs. More background from the NYT in Google Uses Web Searches to Track Flu's Spread

What about privacy concerns? Has Google stepped beyond the boundary of the "trust question" by providing aggregated search information to the CDC? It might depend upon the level of data that is being release to the CDC. Already anyone using Google Trends can get a certain level of aggregated information on a particular topic - for example "Flu".

Privacy is one thing but expectation is another. My experience in dealing with clients on privacy breach matters has lead me to believe that it is often not about whether something should or should not be private -- but rather it is a question of expectation by the person who trusted information with another party. Did that party do something with the information that was unexpected or not agreed to by the parties.

The discussion on privacy has started . . .
Follow the current discussion using the search term: ("google flu trends" privacy) and related search results from Google Blogs.

UPDATE: Interesting follow up thoughts by Mark Hawker and the potential use of Facebook Lexicon as a similar approach to tracking flu and other health conditions.Wasn't aware of Facebook Lexicon feature - interesting tool.

The Health Cloud

Tim Sturgill, MD JD at symtym provides an explanation and insight into the potential shift from silo'ed EHRs controlled by multiple providers to a Health Cloud centralized around a single PHR.

The result of such a shift lessens the need for complex health information exchanges to process and communicate information among a variety of health information silos, matching patient records and trying to match multiple sources of health information that may or may not be identical.

This approach is similar to the discussion and perspective I outlined in a recent article on PHRs for Health Lawyer News.

Graphic image courtesy of Tim's post.