The Internet is a reliable tool for healthcare providers to use to collect self-reported patient information, according to a recent study.
The soundness of healthcare research is critical to all related decisions, to the well-being of patients, and to the approval of related medical care. Thus, the entire community pays careful heed to the accuracy of participants' information, data collection, side effects, and results.
In news that could reshape enterprises' research across vertical markets, a new pilot study from Quintiles's Digital Patient Unit (PDU) validates the reliability of patient-reported outcomes that it collected from people recruited via the Internet.
Quintiles, which helps biopharmaceutical and health sciences organizations "navigate the increasingly complex landscape with more predictability to enable better outcomes," said the pilot demonstrated companies can recruit, screen, and directly enroll people from online communities -- a move that can save both money and time.
A paper was published in the peer-reviewed Journal of Medical Internet Research, and showed the importance of broader adoption of patient-reported outcomes, said Rich Gliklich, MD, president of Quintiles, in a statement:
Utilizing direct-to-patient techniques for real-world data collection not only work in pilot, but we are also leveraging in practice. Given the widespread demand for rapid data collection, direct-to-patient studies will become an increasingly important component of real world evidence development for understanding appropriate cohorts from treatment patterns to safety information.
Others in the healthcare industry are testing the social media and Internet waters for timelier direct patient information as well. And like their counterparts in retail, manufacturing, and yes, politics, they're finding some stimulating results. Take Ahmed Abbasi and his team at the University of Virginia's McIntire School of Commerce and four partners at West Virginia University who received a $130,000 grant from the National Science Foundation to research the analysis of social media to find adverse drug reactions online.
University of Virginia's McIntire School of Commerce
The University of Virginia's McIntire School of Commerce is part of a team using big-data, social media, and the Internet to figure out patients' side effects from new medications, a process expected to shave months off the existing methodology.
The colleagues will use big-data by collecting tweets, Facebook posts, online discussion forums, and blogs to track peoples' comments about any adverse medication reactions they've suffered. Normally, pharmaceutical companies gather data from doctors' offices and hospitals as patients report to their medical facilities; social media is expected to be a faster, more natural communicative tool.
Having the ability to learn about patients' use of medications in their real lives is invaluable to pharmaceutical companies, wrote Sally Bull, research and operations manager at Complete True Life, a test validation organization, on eyeforpharma.com:
We are witnessing the development of real-world studies that bring the patient's voice to the decision making table with force and clarity. How patients respond and react to the development of social networking, information sharing and advances in technology over the next 5–10 years remains to be seen but there is no doubt that it will force a significant step change in how research is leveraged by those looking for true patient insight.
If the Internet and social media have the potential to so dramatically alter the landscape of the healthcare industry, a market constrained by regulatory, security, and patient safety issues, how could these forces affect your organization?
Is there any indication what channels work best for Internet patient-reported outcomes? Does it work better using apps, over a dedicated Website, using social media, email, texting?
FWIW, and things may have changed since then, but based upon the sessions I sat in on and the conversations I had at the Bio-IT Conference in Boston earlier this year, most of the focus has been on dedicated health forums -- with serious studies only beginning to be made on major sites like FB and Twitter.
Researchers began with health-specific, pharma-hosted websites but are now seeking to broaden the scope by using big data to integrate feedback that patients post on social media sites. Of course, this creates many challenges--validity, accuracy, privacy among them. These early studies seem to indicate that accuracy and validity are good, which tends to show these forms of communication hold promise for broader participation and faster insight.
You'd think there would be, but I'm amazed at how many people do share their symptoms, illnesses, and conditions on social media, or those who join support groups using Facebook for their log-on. Personally, that would drive me away! The ability of these tools to anonymously collect info from so many people is a really great way to bring forward researchers' initiatives by days, weeks, or years; they can gather so much more information than they could by other means, even when you weed out bad data.
Joe, I'm not surprised that most of the action happens on dedicated health forums. There are security issues involved, after all -- perhaps the ultimate security issue, as people are more sensitive about health information than anything else, with the possible exception of large sums of money.
Good point Mitch; people are most definitely more sensitive in regards to their health records. Having work at a Hospice for awhile, I know first hand how tedious record keeping can be for healthcare and to be honest, I feel like the biggest aspect of privacy relates to how people feel about their conditions (some embaressed, sad, etc.) and don't want others to know for those reasons.
But yeah, nothing spells privacy louder than large quantities of money, either. But with good reason. If people know you have the money, they will expect you to not be the cheap one in the room. Most people forget that it's being diligent about spending that helps to retain the large dollar amounts.
I would have to say this is a very interesting topic and idea to use social media to get information about side effects and symptoms of medication patients are taking. While the question has been brought up which media is getting the most information, either it be Facebook, Google+, Twitter or another form. While this is an easier and cheaper way to get this data instead of waiting for Dr. Offices and hospitals as patients report this information. The only problem I can see with this is that how many people on the internet stretch or embellish the truth about their symptoms? Makes me wonder how accurate the data is, where as if they go to the Dr or a hospital then it is a real symptom and concern and has been evaluated/confirmed by a medical professional. If this information is taking and can be used to better any medication then I am all for this practice.
I would have to say I am surprised as well that people would put symptoms that would matter out there; I mean other than an upset stomach, cold or flu. While at the same time makes me wonder how much of this information will be accurate and how much of it will be found on people social pages that are just trying to get attention or see if they can get a reaction out of people. So many people today cry wolf just to get attention when they are completely fine for the most part. Tell me how much would you believe on the internet?
I agree, Ronnie, that people having the opportunity to "showcase" or broadcast their self-defined illnesses can skew the information for those wanting attention, and/or the affirmed hypochondriacs.
The value I see, that Alison's article is drawing from, is where there is direct self-defined information provided by the patient directly to the provider, and then that information is aggregated to better understand population health issues. That channel can be beneficial.
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Facebook and Twitter are great for posting cat pictures. But are people really using social media for life-changing communications? Like, if a hurricane comes by and blows down their house?
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Edmunds separates customers into segments based on the info it collects on its site and from partners, and uses that to push out custom content, said Brian Baron, director of business analytics for Edmunds.com, at Predictive Analytics Innovation Summit.
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