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MGK Radio: Ben Heywood, Patients Like Me

Ben Heywood  from PatientsLikeMe.com joined us this morning for a far reaching interview that covered ALS (aka Lou Gehrig’s disease), his brother Stephen’s struggle with the disease which ultimately lead to the creation of the outcome based patient data website www.PatientsLikeMe.com and in a larger sense what REAL health care reform looks like.

Never heard of them? Here’s a brief description of the business take from their website:

Founded in 2004 by three MIT engineers whose collective experience spans from running the world’s only non-profit biotechnology laboratory to large-scale online commerce applications, PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. Our personal experiences with ALS (Lou Gehrig’s disease) inspired us to create a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We’re committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease.

In 1998, a young carpenter named Stephen Heywood was diagnosed with ALS. The Heywood family began taking charge of Stephen’s care, searching the world over for ideas that would extend his life and improve the way he lived. This set in motion a series of events that have led to PatientsLikeMe, a new system of medicine by patients for patients. We’re here to give patients the power to control their disease and to share what they learn with others. We’re here to help you.

Our goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, we’ve created a platform for collecting and sharing real world, outcome-based patient data (patientslikeme.com) and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits. Contact us if you’re interested in working together to achieve our goals.

Our operating costs will be covered by partnerships with healthcare providers that use anonymized data from and permission-based access to the PatientsLikeMe community to drive treatment research and improve medical care. We only share anonymized data with trusted partners and all our patient information is kept safe and secure.

So, how does a topic like this relate to our mission here at MyGreatKid.com?

It’s really three fold and covers much of what we hold valuable here:

  • Their story is, at it’s most basic level, a love story.  Not the classic boy meets girl / girl meets boy love story but a family love story involving three brothers and a family facing off against a terrible disease.
  • It’s a story about sharing and openness.  Rather than turtle up in the corner crying “whoa is me” they mustered their resources, network and creativity to fight for their brother’s health and well being and in the process are literally changing the lives of ten’s of thousands of people.
  • Finally, it’s a story about the remarkable power of technology and it’s amazing ability to drastically change our lives – both now and into the future.

By combining all three of these areas, what started as a quest to help their brother, broadened to a quest to help other’s in a similar battles and is now branching out to changing the entire health care industry.

We talk a lot about the future on our show and on this website because when we’re talking about our kids and how best to prepare them for successful futures you’ve got to live within one foot in the present and a second one in the future.  The challenge with trying to do that of course is that the present is changing so fast that the future becomes more and more difficult to predict.

What is undeniable though is that that the Internet and technology are opening up new pathways to every area of our life from how we gather knowledge, what kind of information we’re able to gather, how we can share that information, how we can network and build relationships with others and at a very real level how we live and experience every moment of our lives.

Folks like the Heywood brothers are pioneers on the leading cusp of that change and that’s why we were so thrilled to introduce them to you.

In addition to the PatientsLikeMe.com website the brother’s were also involved in a documentary  - So Much So Fast – about Stephen’s journey and ALS.  The movie was well received by critics and recognized at numerous independent film festivals.

FRONTLINE: so much so fast | PBS

FRONTLINE: so much so fast: ben heywood’s new web site | PBS

So Much So Fast – Official Film Site

FRONTLINE: so much so fast: “guerrilla science” | PBS

“Given my status, what is the best outcome I can hope to achieve, and how do I get there?” - Jamie Heywood on the role and purpose of healthcare

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