Health 2.0: Communications Reactor Panel – Introducing Matthew Zachary

28 Feb Health 2.0: Communications Reactor Panel – Introducing Matthew Zachary

1. Any process or expression of ideas in which stereotyping of and/or discrimination against people occurs by virtue of their age.
2. Often refers to such actions directed against older people, but the term may also be employed to refer to unreasonable discrimination against anyone where this occurs because of the person’s chronological age.
3. Values, beliefs, and norms that support the proposition that the value and capability of an individual is determined by the age group to which he or she belongs.

This is part 3 of a 4 part interview series (see previous here and here) in anticipation of the upcoming Health 2.0 Conference. This third interview is with Matthew Zachary the Executive Director of the I’m Too Young For This!

Contact:

Matthew Zachary (12-Year Young Adult Survivor)
Founder, Executive Director
I’m Too Young For This!
34 – 71st Street
Brooklyn, NY 11209
work: 877-735-4673 x701
cell: 917-696-5656
fax: 718-745-1928
email: mzachary@imtooyoungforthis.org
web: http://ImTooYoungForThis.org

Bio:

Matthew Zachary is a concert pianist who recovered from a rare and malignant
pediatric brain tumor while in college at the age of 21; a condition which
derailed his music career­–not to mention his ability to walk or swallow–for
several years. Today he’s not only recorded several albums, and performed at
scores of concerts, but he’s also founded the I’m Too Young For This Cancer
Foundation, which is changing the way cancer among the GenX/Y population is
addressed, understood and managed via Web2.0 and Health2.0 technologies.

Tagline:

“We are a pioneering national cancer advocacy, research and support foundation exclusively for the Gen XY (under 40) generation.”

So what does i[2]y actually do?

We are an emerging social enterprise focused on the convergence of Web2.0, Health2.0, social media, youth culture and cancer advocacy, with a little bit of music and the arts thrown in there. We have an essential mission to end the isolation and improve the quality of life for young adults affected by cancer. We achieve this mission through various programming channels.

We have been primarily funded by venture philanthropy and related agencies who are familiar and supportive of our cause. Because of our unique constituency, we have also been recognized by TIME Magazine as a Best 50 Website for 2007, The New York Times, The Washington Post, The Wall Street Journal, The LA Music Awards, over 300 international cancer centers and the majority of the professional oncology societies.

What is your vision for the organization?

At this time our primary vision is to organize, mobilize, activate and to provide voice for the roughly 1.1 million young adults living with, through, and beyond cancer in the US alone. The goal? To reduce cancer deaths by improving early detection, educating providers, and unifying the GenXY consumer population to understand and react to the next generation of cancer communications.

We are currently operationalizing this vision to enable our wildfire expansion, including a long-term plan to re-envision the oncology and cancer care research that has occurred over the last thirty years. The reason we need to do this is the ageism discrimination of this entire body of research renders it not relevant to the under 40 crowd. There is a complete lack of support infrastructure, care access, and social organizations that speak to this unique group. I mean, the entire process needs to be reinvented and changed from this completely analog method which is totally inefficient, outdated, and unacceptable. The biology of an 18 year old is just totally different than that of a 68 year old. The personalization of medicine has been much discussed and what we are advocating is personalization of therapeutic, diagnostic, and related treatment paradigms to account for ageism.

I have never considered that an entire branch of medical science would not have addressed the ageism bias – what are you doing about it?

Like I just mentioned, so much of the last 30 years of clinical cancer research is not applicable to people under 40. But it’s not just the research, it’s the entire continuum as a whole which, itself, is grossly underequipped to handle pretty much anything after the doctor says, ‘You’re cured. Go home.” For young adults, it’s a near slam dunk of inadequacy between a lack of early detection mechanisms, provider resource literacy, fertility and emotional/social safety nets.

In terms of care delivery–particularly pediatric cancer–we’ve made great strides and, for most kids, the disease is curable but often with significant collateral damage and compromise. They may not be dying anymore but they are growing up with an entire set of related problems, or ‘late effects’. One third of the 1.1M young adult survivors in the country are long-term pediatric survivors. We need to develop a bi-model research and care delivery process that is sensitive to this unique population. i[2]y helps to make people aware of these issues, provide advocacy support, and then organizational infrastructure to actually make something happen.

The number one reason why 5-year remission rates for young adults have not improved in 30 years is due to late diagnosis. We can significantly lower mortality with age-appropriate early diagnosis. You can’t change your genes, there is very little you can do to avoid most cancers, so we have to get much better at diagnosing earlier, through less invasive mechanisms, and then support the patient through the bewildering, frightening, and life altering experience. I am on a personal mission to eliminate death and suffering for young adults with cancer.

So how do you define Health 2.0?

It’s basically e-pinions for health on steroids with a very distinctive patient-centered, consumer-driven focus on the disease-management lifestyle. It is the proverbial “Pull versus Push” analogy. It used to be that if you build they will come; we are now finding that “they’ve” already built it and we now have to meet them where they’re at. It’s all about the delivery of targeted digital content.

What do you see as the promise of Health 2.0 movement?

The power of Health 2.0 is the value these tools/technologies can bring to consumers in the way it transfers power to the consumer away from the establishment. It also allows a personalization of the health care experience – making content, search, and information management more directed, targeted, and relevant. I can now literally manage my own health care. I want consumers to be the angry or positive voice for whatever you experience, be able to share your story with a global audience and get involved or else nothing else is going to change. The past 30 years of cancer advances do not benefit the GenX/Y population so there’s no reason to think the next 30 years will be any different unless change happens now. The promise of Health2.0 is that consumers can, must, and will be that force for change.

Diving in, can you give me some specific examples of how your “social enterprise” actually applies Health 2.0 on a daily basis?

We plan to use the social media resources to aggregate our world-wide constituency and organize the world’s targeted niche content for the young adult cancer community. This will include capturing and collateralizing member experiences, producing more literature, and upscaling our website to be a highly interactive and functional site to help our members. Specifically, we use the following tools – Mashup Profiles, RSS, Wikinomics, Tagging, A Ratings System and integrative software technology that integrates in to emerging user-generated content driven solutions such as Google Health.

How do you see the Health 2.0 movement furthering your cause?

We really feel strongly that we need to continue to adapt to the needs of our constituency. We have big plans to continue to develop targeted digital content, to collateralize these new materials, and then advance the message throughout the nation and internationally as well. Everyone is too young for this S(#%. The feeling among young adults with cancer is NOT “why me?” (we don’t need or want your pity) but, rather, “why now?”. I believe the promise of Health 2.0 for us is learning how to use the media, social networking, patient driven advocacy to effect real change.

Who are you most interested to meet at the Conference?

There’s some doctor named Scott. I think he works in waste management. He might be a nice guy to have a [Sprite] with.

😉

I’ve been a big fan of Matthew and Indu for some time now. They are true change agents for our time. I’m also a confessed addict for the sugar that Jane Sarasohn Kahn writes. There’s also this Web 2.0 doctor dude named Jay Parkinson who seems very interesting. Also, my colleagues from Google Health will be there which is always a treat. Outside of that, I’m just honored to be there and build connections with the thought leadership of the Health 2.0 movement.