Tag Archives: Community

Using Twitter to connect with patients 2

by • Clinical Trials, LCOI • Tags: , ,

Lego Walking Gallery_White House

People are inherently social – in all walks and aspects of our lives.  This includes patients and patient advocates and their participation in healthcare.  Individuals, whether they meet at a conference or have built bonds based on their shared experiences with their disease and treatments, are connected like Legos.

There are many social networks where patients interact online. As we examine below, data scientists and researchers are using publicly available posts on Twitter in new ways.

Sick? Tweet about it!

For those who aren’t feeling well, they often turn to their mobile phone or computer and tweet about being under the weather. Researchers at Brigham Young University are paying attention and have parsed tweets and their location data to help entities tracking disease find out where flu symptoms are popping up and where the disease might be headed next. In addition, folks at MappyHealth have built out the same concept to include the trending of a variety of diseases in different regions of the world!

By utilizing Twitter data and location, those involved in disease management can monitor, in real-time, the current state of an outbreak and thereby develop intervention steps to better manage an epidemic – influenza in this case.

Twitter as a discovery tool

Twitter might be the perfect medium for finding conversations amongst patients.  Here’s why: More…

We Like Reply

by • LCOI, Open Innovation • Tags: , , , , , , , , ,

Innovation and Data – Jeffrey Hammerbacher

Heart Gadgets Test Privacy-Law Limits

A recent swell of digital-medical data collected on devices outside of a doctor’s office is raising some thorny questions: Who owns the rights to a patient’s digital footprint and who should control that information? WSJ’s Linda Blake reports.

From virus to viral: Researchers explore social media as preventative method for infectious diseases

MANHATTAN — When it comes to stopping illness, social media posts and tweets may be just what the doctor ordered. More…

Curating Knowledge Within the Patient-Centered Circle Reply

by • LCOI • Tags: , , , , ,

Through our investigative work at Lilly COI, we are identifying a variety of curation tools that allow knowledge to be packaged and shared. The internet has exploded with information, but since it’s not all entirely clear, these tools provide a means for people to not just collect data, but to engage in knowledge curation. In case you’re wondering how this relates to us, curation is the 3rd “C” in our 4C model.

As our team investigates new trends for content curation, I couldn’t help but think back to a “medication brown-bagging” event in pharmacy school.

Patients would put all of their medications in a brown bag, bring them to the event, and place them on a table. The pharmacists and student pharmacists would pair up with respective patients and help educate them on their medications. Some of the discussions centered around intended use and how the medication worked, but it was also a way for us to screen for drug interactions. People left the event with a better understanding of their health moving forward.

Packaging Knowledge in a “Brown Bag”

Imagine taking the best information about a particular disease state from different internet sources (Wikipedia, WebMD, ClinicalCollections, and others), and packaging it into a virtual “bag.”  Now imagine having the ability to share it with others, including social communities centered around certain conditions.  Your digital brown bag could be conveniently carried on your smartphone and your laptop. These tools provide an efficient means for curating and sharing your favorite snippets.

Some web-based applications that currently provide this kind of brown-bagging curation include Scoop.it, Bundlr, and BagtheWeb.  In an upcoming post, look for my review of the most helpful curation tools for healthcare.

This idea dovetails well with the patient-centered medical home setting. Specialists on the team could clip favorite health snippets (e.g. clinical guideline recommendations, medication monographs, and so on) from any website and create patient-specific “bags.” The patient would also have the ability to add or delete content, allowing them to tailor the information to their unique situation. The knowledge they generate could then be passed or followed by others alike.

Eventually, each patient’s virtual bag would contain all of the best information they might need about their disease, making them an expert of their own condition. Who better to ask for help in clinical development than the experts themselves?

Patient-Driven Research Relies on Open Web Info 1

by • Clinical Trials, LCOI • Tags: , , , , , , , , , , , , ,

Ben Harris is a medical physicist from Indiana and an example of a patient conducting a Do It Yourself (DIY) study.    Diagnosed in January of 2011 with ALS (amyotropic lateral sclerosis, also known as Lou Gehrig’s disease), Harris became both the clinical researcher and the single-patient subject in his search for effective treatment of the disease.

It was six months after his diagnosis that Harris took part in a sponsored clinical trial for a new experimental drug.  The treatment gave him some relief from his ALS symptoms and hope that the progression of the disease could be inhibited.  Other patients had similar results.

“Accounts similar to Ben’s began to emerge in the chat-rooms,” says Harris’ brother, who is documenting the events surrounding the ALS diagnosis and the pursuit of this new treatment. “There’s one small problem: the FDA’s process would take between 5 and 7 years before [this new drug] would be approved and made available.  My brother could be dead by then.”  In clinical research, time can mean everything, particularly to patients.

Harris began an intensive Internet search for information about the compound used in the trial. More…