Healthcare Does Not Have a Problem With Silos

August 3, 2017

Healthcare does not have a problem with silos.

In fact, there are no silos in healthcare; there are only boundaries.

If we truly want to change healthcare, we need to break boundaries.

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#IrishMed Chat – Patients and Caregivers Involvement in Research

July 19, 2017

The Research Loop made made its first tweetchat debut on #IrishMed last Wednesday, July 12, 2017.  Dr. Liam Farrell from Ireland founded and moderates this tweetchat every Wednesday at 10pm BST and 5pm EST, bringing together an international group of patients, caregivers, providers, researchers, and many more to discuss a range of healthcare topics.  For this tweetchat, Liam was kind enough to have me as the co-host to talk about patient and caregiver involvement in research.

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Diabulimia Primer

March 3, 2017

This week was National Eating Disorders Awareness Week and so I thought it would be a perfect time to share my “Diabulimia Primer.”  This is a document that I’ve crafted using the research on eating disorders in people with type 1 diabetes.  I take it to every doctors appointment (even endocrinologists) to explain what this eating disorder is all about.

I first developed it because no provider I knew understood the disorder.  So when they saw my extremely high blood sugars, instead of taking the time to understand what was behind them, they would judge me, threaten me, and give me lectures about how I would lose my limbs and die. Many didn’t believe me that insulin can cause weight gain and others still mistook me for someone with type 2 and would tell me I needed to lose weight.  That only made things worse.

In time I’ve found more and more providers have at least heard of the concept but they don’t have a great grasp on what it means or how and why it develops.  The document cites research because I know doctors won’t accept my word for it.  And once they’ve read this primer, they often come to a new understanding and are able to better help me with my treatment.

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Big Pharma Needs to Make a Resolution to Address Borderline Personality Disorder

January 2, 2016

Though 1.6% of the U.S. population have borderline personality disorder (some studies suggest actually up to 5.9% have the diagnosis), as of right now, there are NO FDA approved medications for the treatment of BPD.  I ask this year that Big Pharma make a resolution to address the treatment of and stigma surrounding BPD.

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My Experience as a PCORI Patient Merit Reviewer

April 7, 2013

I just returned from Baltimore where I participated in the PCORI Cycle II Merit Review process.  I learned a lot about PCORI, remembered a lot of my undergrad research (which I thought I’d blocked out), and brought the patient voice to what has been traditionally a scientists only club.

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Sharing Clinical Trial Data

March 30, 2013

While Big Data is a buzzword thrown about as a promise to change health and healthcare, the reality is we still have many barriers in realizing what our health data can really do.  Big Data is the concept of really large data sets.  As part of Obama’s Open Government Initiative, the government has posted an enormous amount of data sets generated by the federal government at Data.gov.  And they’ve released data specific to health at HealthData.gov clinical care provider quality information, nationwide health service provider directories, databases of the latest medical and scientific knowledge, consumer product data, community health performance information, government spending data.

But this data does not include data held by private companies or research institutions who conduct clinical trials.  This leaves data sitting in repositories that could improve public health, enhance patient safety, and spur drug development if shared more widely both within and across sectors.  But the tides are changing.

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Forming Nebular Health Tech in Austin

March 22, 2013

I want to repost this post from the new Nebular Health Tech group founded today in Austin, TX.  As you can tell from this blog, Health IT is incredibly important to me as a human rights advocate, an ePatient, a lawyer, and an activist.

Here is the story about forming Nebular Health Tech in Austin:

While other posts may be more innovation news oriented (guest posts welcome!), I wanted to start with a post about the formation of Nebular Health Tech – what this group is about, who we are, what we’ll do, how we can make a difference in health and healthcare.

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