Using a simple “drag-and-drop” computer interface and DNA self-assembly techniques, Parabon NanoLabs researchers have developed a new automated method of drug development that could reduce the time required to create and test medications, with the support of an NSF Technology Enhancement for Commercial Partnerships grant.
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…
6/7/2013: Earlier this year, we were honored to have Jenny Dwyer author the following post focusing on how clinical trials must be changed to be more patient focused. Jenny’s role as caregiver and advocate in the fight against amyotrophic lateral sclerosis (ALS) provides unique insight into a family’s need for better clinical research options.
We are saddened to hear earlier this week of the passing of Pat Dwyer after a long, powerful struggle with ALS. Jenny and Pat remind us of the need to change the status quo around clinical trials, because people’s lives are at stake. Our thoughts and prayers are with Jenny and her family.
The following blog post is by Jenny Dwyer.
Jenny and her husband Pat live in Seattle, Washington. Jenny is an amazing caregiver to her husband, who has been afflicted by ALS, and has become very well known in the ALS patient advocacy community. After meeting Jenny at the ALS Therapy Development Institute Leadership Summit, we invited her to share her caregiver perspective on clinical trials and drug development.
The opinions expressed by Jenny are her own, and do not necessarily reflect those of the Lilly COI Team.
My husband, Pat Dwyer, was diagnosed with Amyotrophic Lateral Sclerosis, more commonly known as ALS (0r Lou Gehrig’s disease) 7 years ago. Pat was involved in the commercial fishing and marine industry in Alaska and when he first started to lose feeling in his left hand, he thought years of working in the bitter cold were finally getting to him.
However, the strength in his hand began to decrease soon and eventually he started to experience twitches in his upper arm. At a regular annual checkup – our doctor referred Pat to a neurologist. After a few rounds of testing, Pat was diagnosed with ALS.
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?