Health Data Is Like Yogurt: Full of Possibilities | Rheumatoid Arthritis Warrior

Health Data Is Like Yogurt: Full of Possibilities

Show me the data!

Enjoy a laugh with this short adaptation of the legendary “Show me the money” scene from Jerry Maguire created by Dr. Eric Topol of Scripps Translational Science Institute. “Show me the money” has become a kind of motto that also reminds me of Wendy’s old “Where’s the beef?” ads. People want to see proof. And people who get sick (patients) are the same way: they want to see what proof exists that a medication is safe and effective to possibly judge the likelihood it would work for them. People use data to decide which is the best dog food to buy, juice to drink, or food to eat.

Pinkberry options: mango, gingerbread, pomegranate

The health data spectrum

Many collect data about their own health through devices like the Fitbit to measure personal metrics such as number of steps walked and sleep quality. For the past few years, I’ve recommended to patients to get personal copies of lab reports, which seemed like a simple logical step for people with a chronic disease that’s so heterogeneous and unpredictable. While many are talking about the best ways to access and use EHRs (electronic health records), many others still have no idea even what lab tests have been run with their blood. This is what it’s like to live on the cusp of change.

Will clinical trial data be opened?

Last week, I read “I’m a patient: show me the trial data” in British Medical Journal’s personal view column. Alex Lomas, a person who takes adalimumab (Humira in the U.S.), wants to have access to Abbvie’s (formerly Abbott) clinical trial data for that drug. According to the article, Abbott is seeking an injunction in Europe to prevent disclosure of certain trial data.

frozen yogurt with pineapple & blueberriesWould you like blueberries on that?

In the past, few people read clinical trial data – patients or doctors, but that’s changing. Health data could be the new Greek yogurt: everyone wants more of it than we ever expected. And they want to do lots of things with it we would never have imagined before.

It’s a good thing.

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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3 thoughts on “Health Data Is Like Yogurt: Full of Possibilities

  • April 25, 2013 at 8:45 am
    Permalink

    What proof exists that a medication is safe? Ha! When first diagnosed the (former) Rheum handed me a few papers, told me to read them, sign and bring them with me in two weeks for my return visit. He then told me to “get over the deer in the headlights look and get on with my life”. The papers were a very short recap of methotrexate and its side effects. The next page was a legal release, saying I understood the risk. You had to sign the release before he would issue a prescription. (But, doc, if you say it’s safe to take why do I have to sign the release?)

    For about ten years prior to the RA diagnosis I had several issues with my health that no one, except the GYN, was interested in helping me determine the reason. At that point I started asking for copies of my labs. I keep them in a notebook – “just in case”. I have found if I ask a question about them I most often get the response “we’ve got it covered” or that the results are “within the framework for a person with your diagnosis.”

    Even my vets are the same – I recently asked a question about an eye surgery for my dog. The tech told me – you should not read on the internet, you don’t have a degree and you just get all worried – oh yes, and the specialist doesn’t have time to deal with your questions.

    And whether proof of safe medications or clinical trial data – do they really want us to know the truth? How many times have the FDA warnings for side effects been completely dismissed? Perhaps that is why they restrict some of this information to professional membership only. We have freedom of information in other areas – why not with medicine?

    Reply
    • April 25, 2013 at 11:19 am
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      funny you mention that Donna. I haven’t heard of it many times – but that’s how I got the “news” I actually was “diagnosed with RA.” Dr Laptop who I’d seen one time ever – handed me a pile of blurry pages with words mis-spelled – that removed him from responsibility of consequences if I took a dmard.

      Reply
  • August 25, 2016 at 7:04 pm
    Permalink

    I took a long look at the possible complications and side effects involved with DMARDs, and the PERCENTAGE of patients experiencing those effects. Then I thought about my Momma and what she went through with her RD. I took my chances. Now I’m on MTX, Leflunamide, Plaquenil and Simon Aria. And I’m finally feeling a bit better – I THINK! Still having major problems with fatigue.

    I suppose the fact that I’m now well into my mid-70s is also a testament to my medical care. 😉

    Love to you
    Elizabeth

    Reply
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