Technology as a Health Advocate

There are many ways to use technology as a health advocate! Being an informed patient can help you make better decisions regarding nutrition, fitness, disease prevention, disease management, and disease treatment.

DNA Analysis

My daughter-in-law was adopted from Korea. She arrived in the US without an extensive family medical history. When she learned she was expecting her first child, she and my son decided it could be beneficial to know more about her DNA. In addition to the battery of early screening tests offered by their doctor, they chose to have DNA analysis done by 23andMe®.
23andMe
After some initial problems with FDA approval, 23andMe is now approved to offer DNA screening for genetic markers that may indicate a high risk for certain conditions. The list of approved tests include those for genetic variants that may make you more likely to have Celiac Disease (gluten intolerance), Age-Related Macular Degeneration, Alpha-1 Antitrypsin Deficiency (can lead to COPD or emphysema) , Hereditary Hemochromatosis (the body absorbs too much iron from the diet), Hereditary Thrombophilia (abnormality of blood coagulation that increases the risk of blood clots), Late-Onset Alzheimer’s Disease, and Parkinson’s Disease. A complete list of currently available tests is listed on the 23andMe website.

While this service is not intended for diagnosis of any disease, the results provide important knowledge that you can share with your physician. If this additional information lessens the time it takes to secure a diagnosis, it may increase the treatment options available to you. That’s more than worth the $199 price tag.

For that price, you’ll receive additional wellness reports for things such as lactose intolerance, muscle composition, deep sleep and genetic weight; and reports for traits like male hair loss, earwax type, earlobe type, and sweet taste preference. Also included are over 40 reports identifying whether you carry a variant gene for diseases such as Bloom Syndrome (short stature, higher cancer risk, genomic instability), Cystic Fibrosis, Sickle Cell Anemia, Hereditary Fructose Intolerance, and Glycogen Storage Disease Type lb (plus 35 more).

Research Participation

As a 23andMe customer, you can also choose to be a research participant. According to the website: “On average, a customer who chooses to opt into research contributes to over 230 studies on topics that range from Parkinson’s disease to lupus to asthma and more.” This participation has led to publication of 84 research papers since 2010.

Other research participation is facilitated by Apple’s ResearchKit app. For instance, you can participate in the Mount Sinai Asthma Health and Stanford Medicine MyHeart Counts large-scale
medical studies through this software. And the number of research and disease management apps is growing. Hopefully, the ease of using personal electronic devices to participate will increase the number of volunteers for research studies and give researchers an easy avenue for providing research results to participants – an often neglected follow-up.

Disease Management Apps

Health related phone apps reach far beyond research. There are disease management apps that focus on education and awareness, behavior tracking, medication reminders, community and networking. Visit any app store and you’ll find a long list of medical apps in addition to health and fitness apps. That’s great progress in making technology available as a health advocate.
glapps

In spite of such progress, obstacles remain. Last week while I sat through a meeting at the local teaching hospital, I was struck by how many times meeting participants were told that the hospital, med school, research institute, and clinic records are not integrated. The systems will not talk to each other. Information is not shared.

I had two thoughts – 1)This is horrible. Fixing that problem would save the staff time and improve user friendliness and patient care. 2)This could be a good thing. If all records were integrated there would be a huge increase in privacy and accuracy concerns. At least everything gets a 2nd look now because there’s no way to avoid it.

I’m sure I’m not alone in this mixed response. While I’m excited about the knowledge leaps we can make using technological tools, privacy and accuracy are legitimate concerns when using technology as a health advocate. At this specific moment in time, we must carefully weigh how much privacy risk we’re willing to take in order to move knowledge forward or make our healthcare easier.

Should I use the technology?

There are many reasons to embrace the integration of technology into our personal health plans. It can be a great health advocate. If I could have taken a genetic test to my doctor that showed I had a variant marker for Celiac Disease when I was attempting to get a diagnosis for whatever was causing me to break out with unbearably itchy rashes, have abdominal pain, weakness, fatigue, and achy joints, perhaps it would have improved my experience and lessened the time I continued to suffer. I also love the ease with which 23andMe customers can contribute to research. And I can see the benefit of using software to assist with a variety of aspects of disease management.

I suppose any decision regarding technology as a health advocate should be guided by the premise that knowledge is power. Before swabbing saliva or downloading an app, read the
privacy policy. Before participating in a study, ask lots of questions. But beyond that, apply self-knowledge and personal boundaries. If you know that you’re not likely to use a disease management app, don’t download it. Figure out another system that works better for you. If you’re not comfortable participating in research that tests drugs, choose other studies. It is possible to help advance medical knowledge without doing something that violates your boundaries.

For fun, you can let yourself be curious! After all, DNA testing can also help you locate long-lost or surprise relatives.

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

https://www.23andme.com/

https://www.23andme.com/research/

https://www.23andme.com/publications/

https://www.theverge.com/2015/10/21/9581555/fda-23andme-health-data-limited-approval

https://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm376296.htm

https://itunes.apple.com/us/genre/ios-medical/id6020?mt=8

https://play.google.com/store/search?q=medical&c=apps&hl=en

Author: Cheri Thriver

Hello, Cheri Thriver here blogging about cooking, thriving, and the intersection of the two. I’ve been living a gluten-free lifestyle for over 15 years. I understand that it’s rarely a lack of knowledge or the availability of appropriate food that keeps us from making healthy choices. More often than not, it’s an emotional connection, previous trauma, or fear of social reprisal that keeps us stuck. My wish is that you’ll find something here that informs, entertains, or inspires you to change anything that needs to be changed for you to live fully and thrive.

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