LIVESTRONG is a Proud Partner of National Health IT Week


Have you heard of National Health Information Technology Week?

The federal government and hundreds of stakeholder representatives from public, non-profit, academic and corporate groups come together for a week of activity each year. This year, for the very first time, the LIVESTRONG Foundation is a proud partner of #NHIT.

Broadly defined, the goals of this weeklong forum are education, awareness and partnership on a number of different initiatives related to health information technology. Some of these are big, multi-billion dollar efforts, such as the federal meaningful use incentive program that is transforming our nation?s medical offices and hospitals through spurring adoption of electronic health record systems. Others are open-source, public-private collaborations, such as the Blue Button Initiative, which is transforming the way people can access their health information by enabling health care systems, from the VA to several private insurance companies, to provide it all for free, with a single click of a blue button.

It was the latter that was the focus of a public event on Monday, September 10th that focused on how the health care system can do a better job of getting patients, caregivers and families ? referred to rather generically as ?health care consumers? ?participating in their own health. We were asked by the Office of the National Coordinator for Health IT (ONC) to share our thoughts on three different topics alongside a panel of experts:

1. Why is giving people their data so important?
2. What tools have you offered to help people use their own health information?
3. What are you planning to do next?

Why is giving people their data so important?

The simple answer is: it?s what people want. Beyond learning this from the thousands of you who responded to our eHIE survey, it?s become very apparent ? at conferences like this, or simply by talking to people who have control over their financial, travel and other data – that this is simply the new reality. People need to be able to access their information whenever they want to, period.

We also believe it?s better for healthcare ? a renowned group called the Institute of Medicine has been consistent in their advocacy for health IT as a way to improve the quality, efficiency, safety, patient-centeredness and timeliness of health care. The bottom line is this: nobody is as concerned about an individual?s health the same way that that individual or their loved ones are. We are all watching out for number one ? and being able to double check and manage our own data should simply be table stakes.

What Health IT tools have you offered to people?

There are two examples of tools that we?ve made available to cancer patients, caregivers and survivors:

1) The LIVESTRONG Cancer Guide and Tracker App ? A way for people to manage their symptoms, medications, appointments and other information, as well as access related LIVESTRONG support, all with a few taps of an iPad.

2) LIVESTRONG Survivorship Care Plan ? A customized resource for survivors based on diagnosis, surgical and treatment history. The tool covers over a dozen types of cancer that provides them with a roadmap of side effects or possible complications of treatment or surgery, typical follow up care, and other useful information.

What are you planning to do next?

In a word: connectivity. As we?ve said above, the most important consideration in all of this work is to make sure these tools are usable by the people who they?re designed for ? patients, survivors, families, doctors, caregivers. With our app, we?re looking at different partnerships, from incorporating a ?blue button? to automatically download meds, past appointments, treatment history, etc., to testing out different ways to sync it up with a medical system?s data so that patients can share it on-screen with a doctor during a visit.

For the LIVESTRONG Survivorship Care Plan, we?re at the beginning of a two year project to hook up this tool to existing medical records and cancer registries. The goal here is to speed up the process so that patients and doctors don?t have to waste time re-entering information into the form or wonder if they?re using the most up-to-date info.

If you?re interested in learning more about how the LIVESTRONG Foundation is involved in Health IT, or if you?d like to be involved, we?d love to hear from you! Feel free to tweet or e-mail Health IT Manager Naveen Rao.


  1. connectivity – certainly a worthy goal. My medical/hospital experience over the years has shown me there is not much of it, even within the same hospital.

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