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?
When you think of the money and time that hospitals, clinics, universities, and other organizations spend on support groups -- and then consider how many other people could be helped by better-equipped online organizations -- it's a great idea to create social media-enabled services for people and families going through long- or short-term illnesses or diseases. A lot of conditions include exhaustion as a symptom; since many people try and muddle through the day, whether they work f/t or parent or look after a spouse or older relative, they most likely don't want to leave their home once they're done for the day. Having the option of participating in a group setting via videoconferencing or a controlled social media setting would be extremely beneficial. How often have we heard that talking is a great way to control stress? Yet how many people have the time, energy, or inclination to head out for an hour after a long day at work or school? This would be more personal than email, IM or phone, yet much less onerous than in-person.
Social media could be great tool for the health sector. Having different people contribute would also decrease the cost of gathering data while covering a much greater scope. Patients could also use this kind og an initiative to search for possible medications' side effects and other stuff that they would useful and add their own experiences into the mix.
I'm not an expert, but I believe drug companies only have to disclose adverse events to the FDA for a limited period after the drug's release. But yes, even that is going to be a headache, given the quantities of social data now being produced.
I was not aware that they had to disclose every incident from a patient that was on thier medication to the FDA. It would make sense that they steer away from social media beucase if they did not they would be making report after report I bet to the FDA and who knows how much that would cost the Pharm company. Which in the end would only make the medication cost the patient more and more money simply beucase they would have all the claims against them. It is interesting that something that has nothing to do with the meidcation has to be reported though, but I guess that is why there is so many frivilous lawsuits against pharm companies.
Thanks for your comment, she did find alot of people that helped her through it but more importantly it helped my Dad and my sister and myself. We needed the help my mom was always ready and she seemed to never be worried or afraid. While everyone on the site was so helpful to us and explained what will happen and how long they happen till the next stage. The wierd and good thing is that everything was pretty much spot on. This community and the internet made our lives a little easier once again but in a hard time of need.
Your right there will always be Dr.s who are out for themselves and thier pockets. The good ones that will be able ot really help the data that this needs to succeed will prevail that I am sure. Not all Dr.s are corrupt I guess you could say and I am sure that the data will show for itself what information is good and what is not good.
Oh, Ronnie, I am so, so sorry about your mom. I hope she found some additional comfort through the connections and friends she made through the online support community.
I agree about social media, Mitch. Once you've published something, if you allow anyone but yourself to read it or see it, you also allow them to copy it and disseminate it to the world.
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