Well, I’m home from my trip to California to attend a conference on atrophic macular degeneration as a science writer. The experience was unlike anything I’ve ever done before, I must say, but at the end of it all I found myself stepping back from all of the medical and scientific jargon and thinking about the big picture. Atrophic macular degeneration is the biggest cause of blindness in people over 50. That being said, studying the eye causes a significant challenge for researchers, as it’s next to impossible to take a biopsy from the eye as is possible when studying other tissues.
I sat in a room for three days with the genetics groups as they plotted their course for finding further evidence of the genetic risk of atrophic macular degeneration. Approximately 50 percent of the genetic risk factors are known, thanks to recent findings in research, but geneticists are struggling to pin down the rest of this risk because the tissue is difficult to get a hold of immediately following a patient’s death and the remaining genetic risk factors are likely to be rare and varying, requiring a larger collection of population data to find any sort of genetic pattern. The solution? My group suggested an eye tissue bank as a means for collaboration with other research studies to collect an aggregate of genetic knowledge about AMD that will hopefully show patterns in genetics to help locate the rest of the genetic risk.
So…what’s the big deal? They’re using all of this data to find a cure for this disease. And it got me thinking about the future of big data and healthcare. I’ve been assigned WebMD as my company and while I’m up to the challenge, it certainly seems like a murky subject. Thanks to regulations protecting patient data, connecting this data socially via Facebook seems to have created a particularly tricky position for companies like WebMD. There’s no Facebook Connect option with the WebMD website. And they reached 100,000 Facebook fans today, despite being one of the top health websites.
The Washington Post had this to say about the future of healthcare and big data. It seems that no one has been able to crack the code in terms of getting people to participate who are both healthy and combating an illness, an issue that can be problematic if you’re trying to analyze data for replicable use in science.
The frictionless approach of Facebook, at least for WebMD, could prove to be useful, at least in terms of health and wellness at a preventative level. I’ve been thinking about the possibilities. How can people’s actions and reading preferences be used in a way that is both useful and helpful to them, without necessarily advertising embarrassing or otherwise private health conditions to all of your friends? With the new action settings, does Facebook have the potential to monitor your healthy and unhealthy actions based on status updates.
Say you post a status update about your lack of sleep, over-consumption of coffee and general stress from grad school. (That’s every other Facebook status for me.) If I were WebMD, I could refer you to articles that provide basic information on how to combat stress in a healthy way, the health effects of not getting enough sleep or the negative or positive effects of drinking lots of coffee. WebMD has a treasure trove of health information at hand, and while much of that content is there ready for a user to find it, a lot of people go to WebMD to use the symptom checker when they have a cold or to seek out further information if they’ve recently been diagnosed with a disease. This would provide personalized content based on your reading habits.
But what if WebMD could keep you on track for staying healthy and give you recommendations based on your actions to help you live a more healthful life. Would this work? Would people use it? I don’t know. But it would A. give the user a benefit of better health information and B. give WebMD more hits on its website, which results in better leverage to attract advertisers.
WebMD isn’t selling the company anymore, so that’s somewhat positive news.
However, I’m not entirely sure that using Facebook is a solution for WebMD beyond preventative information. Big Data, it seems, is the wave of the future for healthcare, as genomic data and medical histories are aggregated and used to provide personalized medical care based on genetic risk, etc. People sharing their medical histories and genetic data via social media, for me at least, is the ultimate line for the creep factor.
Incorporating something like this new NYT project could be useful for preventative medicine and WebMD perhaps. Imagine having some sort of facebook app that allows you to set health goals, allows the WebMD app to monitor your actions, likes, and readings and then gives you personalized recommendations on healthier actions, or different scientific-data related stories to provide a differing perspective on health based on some other health article you read (science is, afterall, written in pencil, not pen).
Looking forward to feedback from anyone here. I’d give WebMD access to my habits in exchange for a preventative medicine Personal Health Coach, so to speak. Would you? Let me know your thoughts and comments please. Sorry for the long post. It helps to type all of these thoughts out.
In thinking about Chick-fil-a over the past few weeks, I’ve found myself thinking about what the company stands for and why those people who are regular Chick-fil-a consumers are so loyal to what is seemingly just another fast food restaurant. A couple of things come to mind:
1. Chick-fil-a goes out of their way to provide quality food and great customer service. (“My pleasure,” the drive-through attendee always says.)
2. Chick-fil-a is open to providing food for both those who want to eat healthy and those who are a little more haphazard in their eating habits.
3. It’s a family environment. Mothers often arrange play dates for their children here and whole families come to enjoy the food and each others company.
4. CFA provides customers with a sense of community. Particularly in small towns, CFA is known for holding community fundraising events to help out local children’s groups, nonprofits groups, etc.
5. CFA is the epitomy of southern culture..so much so that people who now live outside of the south seek out Chick-fil-a as a means to satisfy a small bit of home sickness for the place they once called home.
So, what does this mean for permeable data? Here’s my idea: I’ll call it Chick-fil-a Connect. Say your single friend in Chicago is an avid Chick-fil-a fan. Say she “likes” CFA on Facebook. What if there was an app that could suggest other people who also like CFA? What if those results then also analyzed other interests and suggested people who she knows (or may not know?) who live nearby? It sounds a little like CFA match.com, but that’s not my intention. The intention is to connect people through their love of CFA. Southerners in northern states could connect and meet up for lunch. Moms could set up play dates with other mothers who enjoy spending time at CFA. You could even match people up based on their interests in philanthropy, suggesting that people meet up with others who have supported the same CFA supported causes. One other aspect could connect two long distance friends, giving them an idea of where the closest CFA is between them. Just as the Delta “I miss you project” showed the amount of money it’d cost to see a friend via a plane, CFA could help people spend time with their friends by suggesting how long of a drive it’d take to meet up with your friend at a CFA somewhere between where both people reside.
I’m not sure that I explained this as eloquently as I would have liked, but the basic tenant is to use people’s interest in CFA and other things to connect people face to face. My idea began as I read a friend’s post about how he and his wife make time for each other with CFA data nights. If you helped people develop this habit, not only as merely a romantic date, but as any kind of “date” (friends, business, neighbors, etc.), you run the chance of helping people develop a long-term habit, thereby securing further loyalty to the company. Thoughts anyone?
I can’t be in class on Thursday, as I’ll be in California for a science writing fellowship at a conference. I welcome your ideas, thoughts and feedback via this blog, on my facebook page, via email (email@example.com) or even via Twitter (@jluton). I want to hear feedback. And any updates on what was discussed in class on Thursday would be great. Many thanks. -JL
This week for this class I was asked to write about open data. After attending Science Online 2012 (#scio12) this past week, it is obvious to me that one of the main advocates for open data are those within the science field. This NYTimes article talks about open science, its importance and even, drumroll please….the conference I attended over the weekend. The push to make more scientific data open and available, both in the form of results and raw data, is based on the premise that open access to this information could progress the field of science, connecting researchers all over the world, and allowing them to compare results, methodologies and have discussions. If there’s one thing I learned at the conference, and there were many takeaways from this technology-driven unconference, it is that many scientists believe in the ideals of open science. Data are also made open for the use of science bloggers and these bloggers often connect with the scientists themselves and have the ability, through open access to so many different types of research online, to find the context that’s necessary to paint a whole picture for readers of science blogs and science-related articles. While I was there, I met everyone from scientists, science PR specialists, former scientists turned bloggers, bloggers turned scientists and even the average Joe with an appetite for science. Want to know more about open science? Here’s a link to a session on the topic at last year’s conference: http://www.wired.com/wiredscience/2011/03/how-to-crack-open-science-from-scienceonline/.
Now, back to the general topic of open data. What is it? And how is it useful? First off, there are several definitions of open data, however the general idea behind the term is basically the same:
According to Wikipedia:
Open data is the idea that certain data should be freely available to everyone to use and republish as they wish, without restrictions from copyright, patents or other mechanisms of control. The goals of the open data movement are similar to those of other “Open” movements such as open source, open content, and open access. The philosophy behind open data has been long established (for example in the Mertonian tradition of science), but the term “open data” itself is recent, gaining popularity with the rise of the Internet and, especially, with the launch of open-data government initiatives such as Data.gov.
Open data, as it stands now, is mainly available in the field of science, but much of the data that’s out there, the raw data that’s free and open to the public to use, actually comes from governments. So, what the heck is open data good for? With generally available data for all to see, data can be compiled for interactive use for many different purposes. Take a look at this TED talk and you’ll see just a few examples of how this kind of data is being used.
According to this UK government website, open data is defined as:
The idea behind open data is that information held by government should be freely available to use and re-mix by the public. It’s a movement to make non-personal data:
- open so that it can be turned into useful applications
- support transparency and accountability
- make sharing data between public sector partners more efficient.
The Government is committed to making much more public data openly available. On 22 March 2010, the Prime Minister announced that the Government was going to:
“…use digital technology to open up data with the aim of providing every citizen in Britain with true ownership and accountability over the services they demand from government.”
Current and planned initiatives include:
- data.gov.uk, which is a single, easy-to-use website for access to 3,000 public data sets
- the Office for National Statistics (ONS) opening up access to over two billion data items at the local neighbourhood level.
The UK government has done a lot with the data they’ve made open and available to the public. Check out what they offer here.
The U.S. has a similar website, with interactive data sets, raw data sets and apps, just as in the UK. You can check out all of that data here.
To take a look a little closer to home, check out Georgia’s open data website: http://www.open.georgia.gov/.
I hope that provides a good overview of what exactly open data is and why it is useful. I’m amazed at just how much raw data is out there and the thought crosses my mind that only a fraction of this data is probably being used in an efficient way.
This week for our Big Data class, I was asked to write about Open Graph. What is it? How will it be useful? What are the drawbacks? And what’s the latest and the greatest in Open Graph news?
A simple Google search for open graph brings up myriad posts related to application development for Facebook and, most importantly, a breaking news story about new open graph applications allegedly being implemented this week. So what is open graph? And why should be we care that new applications for Facebook will be using it?
To answer this question, I found this video to be quite helpful in explaining what open graph is and what it means for companies and marketing. It’s a 20-minute video, but provides knowledgeable insight into the future of marketing for companies on facebook.
To boil it all down to a single point, open graph on Facebook is a means by which to keep up with everything you click “like” on–whether you’re viewing it through facebook or viewing it on another website. It integrates all the things you like, lets you know which of your friends like it and serves as means not only for Facebook, but for companies to make money in a new kind of marketing. Just as celebrity endorsements have been used for years to recommend products, Facebook’s open graph now give you the opportunity to get recommendations not from celebrities, but from the very people you know.
Previously, the open graph allowed users to like links to articles and content. Here’s a quick video about Open Graph that was made when the idea was first introduced in April 2010. Beginning tomorrow, users will be able to share their actions and activities.
According to this business insider article:
Until now, we’ve only had our hands on a few Open Graph apps like Washington Post Social Reader and Spotify. These apps let friends know when you’re listening to or reading.
Here’s how it’s going to look:
Each Open Graph app gets its own “verb” like ran, listened, cooked, watched or read. These verbs show friends how you’re interacting with something in your digital life.
If you spy a friend listening to a song, you can even hop in and start listening with your friend, at the same point in the song as he or she is.
Want to know more? Here’s a few more links for your perusal: