Collaboration, Discovery and Insight through Open Data Initiatives 1

"Open Health: stethoscope" by Maria Boehling for is licensed under CC-BY-2.0.

This work, “Open Health” is a deriviative of “Open Health: stethoscope” by Maria Boehling for, used under CC-BY-2.0.

Last week, our friends at PACE Network USA were kind enough to invite me to write a guest blog for their site about open data initiatives and their potential impact on clinical trials. In the post, we mention OpenFDA as an example of the kinds of open data that could be a boon for health-related app developers and patients alike:

Simply put, open data initiatives like openFDA create new opportunities for collaboration, discovery and insight, and could greatly improve clinical trials by increasing researchers’ ability to learn from earlier studies and real-life occurrences. Projects like the American Society of Clinical Oncology’s CancerLinQ and Project Data Sphere (PDS) have already begun to change how oncologists share information with other oncologists. OpenFDA expands on these initiatives by allowing researchers from private companies and research institutions to easily access the wealth of information stored in the FDA’s archives. For patients, this can potentially accelerate access to lifesaving innovation. (from The FDA on Open Data)

Some developer teams have already taken on the task of developing web applications from the available FDA data. Social Health Insights, for example, created what is believed to be the first app based on OpenFDA data within hours of its release.


Access to Medical Records Might Help Patients Match to Clinical Trials

Recently, NPR featured a story about an experimental program called OpenNotes, which gives people access to the notes doctors write about them. Though there was some trepidation on the part of doctors, the program turned out to be tremendously successful. For example,  80 percent of patients reported having a better understanding of their health, and two-thirds said they were more disciplined about taking their prescribed medications.

Advocates like ePatient DaveRegina Holliday and many others have been leading the charge to demand patient access to their personal health information across all medical specialities and organizations. Healthcare is not a one-size-fits-all proposition. Assuring patients have access to their information is fundamental to support making the best, most-informed, personal healthcare choices.  The success of OpenNotes makes us feel encouraged about the possibility that making it easier for patients to access their medical information will also make it easier for them to connect to clinical research studies. And, there’s also a lot of promise in initiatives like Blue Button, which allows people to access and download their health records online.


The Paper Kingdom: Fighting Fears about Clinical Trials

The NIH’s National Heart, Lung and Blood Institute (NHLBI), with help from WisdomTools and the New England Research Institutes, has created a  role playing video game (RPG) called The Paper Kingdom. The game was developed to help ease the fears of kids and their parents and to help them learn more about clinical trials before making a decision about whether to participate in one. You can download the game for Windows or Mac computers from the Children and Clinical Studies section of  the NHLBI’s website.

The game starts out like a picture book; a few slides set the scene. You are sent to remind your brother to take his medicine, but you find that he’s not in his room. Suddenly, you are transported into a book titled, The Paper Kingdom, that you find laying on your brother’s floor. His fears about joining a clinical trial have come to life within the book. You must rescue him from them by educating him about clinical trials.


Addressing Patients’ Needs Through Information Technology 1


MEDRETE in the Bac Ninh Province of Vietnam by The U.S. Army is licensed under CC-BY-2.0

In our conversations with patients, a theme that emerges again and again is the need for more access to information. People often say they often feel they are left in the dark due to either the deliberate withholding of information, or through unintentional muddying of information through poorly designed forms or websites or through poor communication. All of these make it difficult for them to make informed decisions about their healthcare.

Also, while patients do want and need access to personal data, like their health records and test results, oftentimes it’s simple, logistical information that could make the biggest immediate impact in their day-to-day lives. Driving directions, parking information, what to expect during an appointment, contact information for a specific person you can talk to if you have questions about your appointment before or after—all of these seemingly basic bits of information can be hard for patients to come by without having to search several different websites, make a few phone calls, and spend a lot of their own personal time arranging their visit. And, for those who also trying to manage the symptoms of a chronic illness, jumping through all of these hoops can be especially frustrating.

Our particular focus is on how to give better access to information about clinical trials through technology. Fortunately, it seems that more Health Technology experts are looking for ways they can tackle these issues. There are many good examples within the broader healthcare realm that may help to generate more ideas for developing patient-centered technological resources for clinical trial seekers and participants. One example we were alerted to recently, is a website called UberDok, by eWiz Technology. The site is currently in the Beta testing phase.