2 posts tagged “accessible data”

PatientsLikeMe at the White House: A new initiative to give patients more control of their health data

Posted 7 months ago by

Last month, PatientsLikeMe’s Sally Okun, VP of Policy & Ethics, was invited to the White House to attend a small executive discussion. The topic? Making the electronic health record (EHRs) experience more patient-centric and accessible, and the importance of “healthcare data interoperability” — the idea that different electronic health record systems should work together in an information network. Read on for Sally’s recap of the day and what came out of it: the MyHealthEData Initiative.

The topic for the meeting focused on electronic health records (EHRs) and interoperability, with specific attention to privacy and data protection. Joining me around the long wooden table in the suitably decorous room were eleven other invited “innovators” and our hosts: Seema Verma, who heads the Centers for Medicare and Medicaid Service (CMS), Don Rucker, the National Coordinator for Health Information Technology, and Chris Liddell, Senior Advisor to the President and Director of Strategic Initiatives.

The discussion started with our hosts giving their perspective on the need to ensure patients and their providers have access to needed health information. We then went around the table for introductions and we were given 2-3 minutes to offer comments on the topic.

“For the most part there was widespread agreement that patients need and want to have control of their health data and that there is a willingness to accept some risk to privacy for a meaningful health record accessible to them and their providers.”

Here’s a recap of my 2-3 minute megaphone moment in response to the questions we were asked to consider:

How important is interoperability to you and why?

All interoperability is good if the end goal is to enable access to data easily. As a patient/consumer I expect that all information/data about me and my health should be accessible to me and those I choose to share it with. To that end, it’s essential that data is where it needs to be when it is needed across all providers and settings of care — which includes me and my family caregivers as “providers” and my home as a “setting of care.”

What have been the main barriers and how might we overcome them?

Our current EHRs focus on billing and administrative functions. There is very little in the EHR functionality designed to drive care decisions and improve health outcomes for patients.

Vendors have not only created systems with little relevance to patient-centricity, they have actually “dumbed-down” the entire patient relationship with their health data in patient portals which, for the most part, offer little or no insight into one’s health.

Despite the fact that most of us spend the majority of our time outside of the clinical space the incentives to build EHR systems has focused on hospitals and physician offices. No incentives or money were allocated to create systems that could connect with other settings of care such as our homes, long-term care, mental health services and community-based service providers.

What approaches do you recommend to provide maximum benefit to the patient?

After almost a decade and billions of dollars spent on health information technology, neither providers nor patients have access to a longitudinal health record. We need space and resources for innovators to enter the marketplace to drive solutions. There’s no lack of technological expertise and creativity, but much of this is not inside the walls of our traditional health systems, and the current EHR vendors have no incentives to “rebuild” or “unbuild” their current systems to be patient-centric and patient-controlled.

The Centers for Medicare and Medicaid Service is in a position to realign and leverage their considerable resources to support creating new solutions that bring personal health data into the 21st century for improving health and wellbeing.

(Alas, I have no pictures other than the entry doors into the West Wing because all electronic devices were placed in lockers in the West Wing lobby.)

In the days following this meeting, the White House announced the launch of the MyHealthEData Initiative to enable a system in which patients have control of their data and can be assured it will follow them to each of their healthcare providers.

It is always a privilege for me to represent PatientsLikeMe and to ensure our members have a voice at many tables — including one at the White House. I am especially pleased to see that the MyHealtheData Initiative aligns with the patient first perspective I delivered on behalf of the PatientsLikeMe community in the Roosevelt Room of the White House just a few days before.

Want to learn more about raising the patient voice? Join PatientsLikeMe today to connect with more than 600,000 members living with health conditions!

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How to Thrive: Takeaways from TEDx Cambridge

Posted November 30th, 2011 by

Patient Experience Manager Kate Brigham and I attended TEDx Cambridge last week, a one-day event full of thought-provoking and inspirational talks about Ideas Worth Spreading (TED’s mission). The participants didn’t want to just survive, they wanted to Thrive, which was this year’s theme. Speakers, including our President and Co-Founder Ben Heywood, enlightened the crowd with how we can help ourselves in small ways and inspire others in the process.

The Entrance to TEDx Cambridge 2011

Throughout four sessions packed with 30+ speakers on the topics of Mind, Body, We, and Beyond, many shared how people can improve themselves individually, by being part of a community, and by giving back to others. Some advice is expected—sleep more, drink less caffeine, eat more vegetables, try yoga—but other points were more novel.

For example, we were encouraged by Matt Daniell to try something, anything, for a month as “time becomes much more memorable when undertaking 30 day challenges.” Using research on the effects of body posture on hormones, Amy Cuddy shared that doing a power pose for just a few minutes (like putting your feet up on your desk) is minimal effort, but can benefit your brain as well as others’ perception of you. (Note: she recommended we put our feet up in private, not in a meeting!) One of the lessons that seemed to resonate most was from Priya Parker, who encouraged the audience to not worry about keeping all options open—that it’s FOMO (the fear of missing out) and FOBO (the fear of better opportunities) that contribute to many people’s anxiety and stress.

PatientsLikeMe President and TEDx Speaker Ben Heywood (Center) Along with Brothers Jamie Heywood (Left) and Stephen Heywood (Right), Whose ALS Diagnosis Inspired the Creation of PatientsLikeMe

In addition to Ben talking about PatientsLikeMe, other speakers shared the importance of connecting people with others like them, making data more accessible and empowering patients to take control of their health. Greg Epstein and Jesus Gerena, although in different fields (a Humanist Chaplain and Activist, respectively) arrived at the same conclusion: that when people come together and help one another, the entire group is empowered and everyone benefits.

Our ears also perked up when Sandy Pentland, a social scientist at MIT, discussed how important data is and stated that “personal data is the new oil of the Internet.” Further affirming the importance of data, John Sheffield talked about how he wants to make sure that genomics analysis is accessible, repeatable and shareable. He’s found in his field of data architecture that’s it’s all about connections with others, a point of view we certainly share!

Heart Patient and TEDx Speaker Hugo Campos

One story that perhaps applies most to what we’re doing here at PatientsLikeMe was presented by Hugo Campos, a heart patient who is literally on a quest to liberate data from his own heart. Although he has a high-tech cardiac defibrillator, he doesn’t have access to the data collected by this device. We’re with you, Hugo: “We all have the right to our own health information!”

At PatientsLikeMe, we help people Thrive by connecting patients so that they can share their experiences, find others like them and, together, learn how to best improve their health. From disease-specific outcome scores to our Quality of Life survey and InstantMe tool, we offer all sorts of ways to monitor your health and assess the impact of various treatments and interventions.

How do you help yourself and others Thrive? Share your thoughts in the comments section.  Also, check out the video of Ben’s talk.

PatientsLikeMe member emorgan