Why PGen? Why eBird? Why Share at All?

Pic of the day - Raptor

In the previous post, My “Why”, or, Flipping Healthcare & Research Upside Down, I went into this explanation of why I’m doing this. The “why” was probably too long.

Yesterday I was looking at a blog and saw an explanation from someone else who evidently gets it, gets this idea and explained it perhaps a little more simply.

Wrenaissance: Why eBird?: http://wrenaissance.com/2012/04/why-ebird/

Wrenaissance is talking about a citizen science effort to collect and gather data from birders, hobbyists who specialize in bird watching, but who don’t just look at the birds but also keep some data about what they see, where, when, all that. Wren points out that this is a lot of work, and that what you need to satisfy your own personal wants in this area might be very different from what is collected for science initiatives, even citizen science. It’s work. Why would you want to do this, when it means more work?

Then Wren points out a New York Times article in which they noted that without the “yardstick” of data from earlier people who kept their logs and shared their data (ie. Thoreau?) we wouldn’t realize now how much things have changed. For herself, Wren puts it this way:

“I’m honored that eBird wants my data. In addition to not being a poet or essayist, I’m neither scientist nor expert birder. The memory of what I’ve seen and loved in the natural world would vanish without a trace. However, even if I can’t preserve the poetry, I can do this small thing to preserve the world.”

For me, participating in PGen is not so much about preserving the past and present as paving a path to a more personalized and responsive future in healthcare. But really, citizen science, all of it, is many people who are not poets or essayists or scientists or experts saying, “I can do this small thing to help.”

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My “Why”, or, Flipping Healthcare & Research Upside Down

Today someone posted a question about this study in the Patients Like Me forums. They wondered if other folk were doing this, and what they thought about it. This was my reply.

Found Words: Question Marks

Hi! I’m participating, and I’m blogging it. I’m both excited and nervous. What do I think about it? I think it is super important. I’m a medical librarian, and this (personalized genomics) is a topic that has come up quite a bit recently. The more I learn about it, the more important I think it is. At the same time, our culture hasn’t exactly caught up with the ideas behind what makes it important. Because I’m blogging it and plan to make as much of the information public as possible, I’m talking with my family. I don’t want to upset them about my making personal genomic info public. Luckily, so far, they get it (but I still haven’t talked with everyone yet).

You see, my family has a boatload of chronic conditions that have genetic associations. We also tend to be outliers when it comes to regular treatments. We have bizarre and unpredictable reactions to medications, ranging from unheard of side effects to completely ineffective to super effective (and supersensitive, too). We tend to be extremely hard to diagnose, and often present with atypical symptoms. Sounds like a mess, doesn’t it?

The modern model of healthcare is ill-suited to patients like me and my family. It focuses on the mean, people whose presentation, symptoms, and response to treatments fit nicely under the standard distribution bell curve, all clustered around the center. Science and healthcare are shifting, though, and a good thing, too! The new direction is personalization — customized, personalized treatments designed to work for YOU and no one else.

I describe it to my family like this. Right now, you get sick, and the doctor gives you a prescription. You fill this at the pharmacy, and get the same medicine that anyone else would get. The same pills, shaped the same, colored the same, tasting the same, formulated the same. Why? Because that is what works for most people, and because there are economies of scale in bulk production. God help you if you have a rare condition or don’t respond well to the normal treatment. There is no monetary incentive to develop treatments for the folk who are off at the fringe, instead of “normal”; there are no “economies of scale.”

With personalized healthcare, the hope is that instead of a common generic prescription, you’ll get a treatment that is customized for you. Ideally this will eventually mean customized based on your genetics, your past experiences, where you grew up, events that impacted the community around you, your personal history, recent events, and more. When you’ve spent a lot of time in a healthcare system that doesn’t do well with “rare” or “outlier”, the idea of a healthcare system focused on personalization and customization becomes very appealing.

But we aren’t there yet. We still need to get there. I watched a lot of the recent TEDMED presentations. One of the main ideas I took away is that to get the model of healthcare flipped from bell-curve to custom, from factory-style care to clinician-patient partnerships, there are a few things that need to happen. A big one is that research on which healthcare decisionmaking is based also needs to flip. Research needs to change from the traditional model of “hypothesis generation, data generation/collection, analysis, repeat” to something we don’t have yet, starting with LOTS of data from LOTS of people (“big data”) as the first step, and then this is followed by new ways of looking at and analyzing data, and new ways of collaboratively discovering important patterns that lead to important questions. Flip. Turning it backwards.

Before any of this can happen, the researchers and scientists need to start with that “big data” I mentioned. To get the data, they need people like us, lots of people like us, to share our data. If people are afraid to share their data, then it is business as usual, “the way things have always been.” If we want it to change, then someone, a few someones, need to go first, need to take the risk, need to show others it’s ok. “Come on in, the water’s fine!”

I don’t expect other people to be blogging about this, but for me, I felt it was important. I work in healthcare, health literacy, emerging technologies … it’s a fit. Not to mention that I work in a unit that supports one of the research teams on this study, so my participation actually supports my job and my community. So that’s for me. I am really hoping that others will also participate. Right now, this is a pretty basic introductory study — who is willing to do personal genomics, why, and what do they do with the info. I’m being an outlier again, by broadcasting the whole experience. They’ll need to hear from the rest of you to get a more balanced picture.

If you aren’t sure about what all this is or does, you might want to take a look at WeConsent.Us which is a website designed to provide a clear, plain language overview of the risks and benefits of personal genomics.