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23 and Who? The results

This post is the 2nd in a 2-part series on our experiences with 23andMe.

Wellpepper: What made you want to try 23andMe?

Anne Weiler: I wanted to see what the customer experience was like. It seemed so simple. $99 and they promise to tell you about your ancestry and DNA.

Jacquie Scarlett: I was really interested in getting back the results and seeing if the information I received from 23andMe was consistent with what I already knew about myself and my family history.

Wellpepper: What did you think you would learn?

Anne: I was curious about my ancestry. I had a theory that somewhere in my family someone was Jewish. They weren’t.

Jacquie: I figured that I would get confirmation that I was mostly European and that arthritis ran deep in my history and would be a high risk for me.

Wellpepper: Were you surprised by the results?

Anne: Originally, I was surprised at being 99.9% European. People are always asking where I’m from and they aren’t satisfied with “Canada” as an answer. When I was travelling in Nepal people thought I was half Nepalese. However, since I originally received results, they have been refined, and I’m now only 99.5.% European. I am not sure if that explains anything though.Anne Weiler Ancestry from 23andMe

Jacquie: I wasn’t overly surprised by the results, but found some items very interesting. I knew that I would be mostly European, and I was – 99.7% (mostly British and Irish) – but it was fun to find out that I was .1% Jewish and .1% Native American.  It was also pretty cool to see 479 DNA relatives pop up in my results from all over North America and the UK.

Wellpepper: What was the most surprising result?

Anne: Most surprising were results that contradict my actual experience. For example, 23andMe says I’m at reduced risk for Psoriasis, a hereditary disease that runs in my family and that I do in fact have. This does make me question other results.

Jacquie: There were a few illnesses in the Elevated Risk section that took me back for a moment, but then when I dove into the results I realized that I was merely a few % points above the average for all people and I relaxed. It is a bit surprising to see those illnesses listed in front of you.

Wellpepper: What was the least surprising?

Anne: That I’m at risk for glaucoma. It’s hereditary and I’m familiar with my family history.

Jacquie: High risk for arthritis – very prevalent in my family history and I already have the illness.

Wellpepper: What is your understanding of the accuracy of this test?

Anne: I don’t know the statistical accuracy, but I know that 23andMe was trying to get to 1M DNA records sampled so that they could claim accuracy. I also saw the NY Times article showing the discrepancies between tests. Based on some of my results that are wrong it’s hard to know. The brain is funny though: I definitely want to believe that the results showing low risk for Parkinson’s or MS are correct even though I have other results that are incorrect based on my personal experience.

Jacquie:  I do not know. I have the understanding that the more DNA they receive from the population, the more accurate the results will be and the more information they will be able to find out. I took this as an opportunity to learn more about DNA and the possibilities of what you could learn versus that this is the absolute truth.

Wellpepper: What was it like to receive your results?

Anne: Anne Weiler Norovirus ResistanceIt was addictive. We all want to know about ourselves, and here it was, in great detail. I really loved the random things I found out, like I’m resistant to Norovirus (stomach flu) or that I am likely to sneeze in bright sunlight. I intuitively sensed those things, but had no idea they were genetic.

Jacquie: It was pretty fun and interesting. I love learning more about myself and family history. Even though there was a lot of information, I found myself wanting more and wanting to dive deeper. Every time there was an unknown listed – I wanted the answer – this is what keeps me coming back to the site.

Wellpepper: Since you have received your results how have you engaged with 23andMe?

Anne: They are very good at pulling you back in, either through relatives who want to connect or by releasing new test results. That’s the really interesting (and scary) part. Once your DNA is analyzed it remains on file and they run new tests or more accurate versions of previous tests on it. I didn’t realize that it was going to be such a sticky experience.Anne Weiler DNA Relatives

Jacquie: I have checked in from time to time to see if any of my results have been updated. I also really enjoy doing the surveys – I am very interested in the research that 23andMe is doing and want to help in any way I can.

Wellpepper: Have you shared your information with anyone? Who and how?

Anne: I’ve connected with two 2nd or 3rd cousins on the 23andMe website. I’m interested in finding my maternal grandmother’s family. We don’t know as much about them.

Jacquie: I have shared my results with close friends and family, mostly with family to entice them to do the test as well.

Wellpepper: Would you share it with your doctor?

Anne: If I thought it was relevant to symptoms I was experiencing yes, but otherwise not unless my doctor asked. Doctors are being overloaded with data these days.

Jacquie: I would share the results with them if they would find it helpful.

Wellpepper: Do you think 23andMe will continue to engage you?

Anne: I don’t seem myself using it all the time, but as I mentioned before they do a good job of bringing you back in, and maybe I’ll become more interested in genealogy as I get older.

Jacquie: I will check in here and there. I imagine that if I have a health situation, it will be helpful to be able to pull these results when needed.Anne Weiler Asparagus 23andMe

Wellpepper: Do you think people should have access to this type of personal health information? Is it dangerous?

Anne: They should definitely have access. I thought 23andMe did a good job of presenting potentially disturbing results with the appropriate cautions. For results for chronic and debilitating diseases they make everyone read information about the disease before they tell you if you have the marker for it. I think it could be dangerous if someone started to make changes before talking to their doctor, except for some basic things like avoiding tobacco or caffeine, which are good for you regardless of the markers you have.

Jacquie: Absolutely! I think it’s very beneficial for people to have the most information possible so that they know more about themselves and feel empowered to take care of themselves and their health.

Wellpepper: Based on receiving your results, will you make any personal changes?

Anne:  I will be more helpful to people with stomach flu since I know I can’t catch it, and I’ll be even more strict on my caffeine in the morning only policy.

Jacquie: The results weren’t surprising enough to cause any personal changes.

 

Posted in: Behavior Change, Health Regulations, Healthcare Disruption, Healthcare Technology

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Wellpepper’s Top Health Tech Stories of 2013

It’s the time of year to reflect and make lists! It’s been a great year for Wellpepper: our first full year in business. We’ve enjoyed bringing new features to our users and learning more about the needs of both patients and healthcare providers. We’re committed to building useful tools that patients and providers love to use. We’ve been inspired at conferences meeting with end-users, hospital administrators, and other startups who share the same mission of changing how patients and providers engage around their health. We’ve experienced the power of social media, met new friends through Twitter, and learned so much from Tweetchats. As a young company, it’s been a year of firsts for us that, while monumental for us, pale in comparison with the changes going on in health IT, so rather than telling you more about us, let’s talk about the year in Health Tech.

There is no scientific basis to this list, just what we think stands out from the year in Health Tech.

Healthcare.gov

The beleaguered website was definitely the top Health IT story of the year. At Wellpepper we were unable to make it through the registration process ourselves, and ended up going to a broker to find out our healthcare options. As the news came out on why the site was so bad, it was pretty obvious there was a lack of accountability and no project management. It’s really unfortunate that the Affordable Care Act was mired in this mess of an implementation, but we’re very excited that former Microsoft exec Kurt DelBene is taking the reins. Ship It!

Quantified-Self Hits the Mainstream

tec-gift-guide-fitness-trackers.jpeg-1280x960Or, “everyone is tracking.” The mainstream press started writing about fitness gadgets and our Facebook feeds were full of friends who got new FitBits for Christmas. Not sure what this means about the trend though. We have found the FitBit to be really interesting to calibrate activities, for example, a game of Ultimate Frisbee but after you know how inactive or active you are do you really need to track? And do you become okay with your activity or lack thereof?

Meaningful Use Phase Delayed

The Centers for Medicare and Medicaid have delayed the deadlines for implementing Meaningful Use Stage 2. Stage 2 will be extended through 2016 and Stage 3 won’t begin until at least fiscal year 2017 for hospitals. Meaningful Use Stage 2 focuses on patient engagement, which is very minimally defined as patients interacting with healthcare information electronically. We’ve always said that electronic medical records vendors are not the best equipped to deliver tools that patients (ie consumers) want to use, so it’s not surprising that healthcare providers are struggling with this phase. That said, m-health is poised to deliver on these requirements.Wellpepper2-1195a

M-Health Comes of Age

While we can definitely debate where we are in the m-health hype cycle, there is no question that M-Health is a formidable category. The FDA is now monitoring and releasing guidelines, albeit with little clarification. Eric Topol made headlines by using an iPhone EKG on a plane to diagnose a heart attack and and advise the captain to make an emergency landing. Most positively, we’re hearing less talk of ‘apps’, and more talk of integrating mobile health into the overall patient experience and the official hospital records.

23andMe Ignores FDA

Source: Wikipedia commons

You might consider this one to be a bit specific, but it’s representative of a number of key stories in 2013: big data, the explosion of healthcare investing, and the dramatic gulf between current Health IT and other technologies, and between Silicon Valley and the FDA. 23andMe, which does cheap DNA testing, direct to consumer, was forced to stop providing genetic results and only include ancestry after effectively ignoring FDA warnings for over a year. Speculation is that they were trying to get to a million tests (they are at about 500K) so that they could prove their tests were valid and thereby circumvent long FDA approval processes. Those on the side of the FDA saw this as Silicon Valley thumbing their nose at patient safety and regulations. Those on the side of 23andMe saw this as tech disruption at its purest. As recipients of some of the last full genetic and ancestry tests before the shut-down, expect more from us on this topic. 😉

This one is not healthtech, but we’d be remiss if we didn’t mention the focus on costs of care. Time Magazine, and the New York Times both published rather scathing interactive features on the costs of healthcare in the US. One of Reddit’s top threads right now is about a $50,000 appendectomy. It’s great to see these issues called to light. Let’s hope we see progress in solving them in 2014.


NewYearWP

We’re pretty excited to see what 2014 brings Wellpepper and what new innovations, disruptions, and improvements are brought to the healthcare industry as a whole. Best to you and yours from all of us at Wellpepper!

Posted in: Health Regulations, Healthcare Disruption, Healthcare Technology, M-health

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