2:20 - 3:05 pmSaturday, September 6
LK 130
We are not waiting - how ePatients can take medical devices (and healthcare) to the next level
LK 130
We are not waiting - how ePatients can take medical devices (and healthcare) to the next level
ePatient; Manager, Digital Marketing & Internal Communications
BA, ePatient Scholar
ePatient Scholar; Founder, Databetes
What if we didn't have to rely on medical device manufacturers to innovate in order to improve the quality of life for patients? What if patients could take their existing medical devices and use new applications... Read more

Description

What if we didn't have to rely on medical device manufacturers to innovate in order to improve the quality of life for patients? What if patients could take their existing medical devices and use new applications and software to take their disease management capabilities to the next level? What if a simple set of algorithms could be added to help solve known problems of existing medical devices? What if patients could build upon each other's work?

These are no longer "what if" health care scenarios - this is now. I am an ePatient, and I am not waiting for my medical device companies to innovate further. I can't - I might be dead before they solve even basic problems, like making the audio in my medical device loud enough to wake me up at night. So we are not waiting - we collaborated with other patients and are making and using our own tools.  This not only improves quality of life by reducing cognitive load for patients, but also has yielded improved outcomes for short and long term measures.

The tool I'm building is called #DIYPS, or the "do it yourself pancreas system". There's no company, institution, or organization behind it. I'm an ePatient and with one other person am building the system in my free time. It started as a project to improve the audio capabilities on my continuous glucose monitor, and evolved into a remote monitoring and alert system… and then also became a full-fledged decision support system. This project is currently applied to n=1, but the outcomes (improved average glucose; improved standard deviation and time spent in range, and most importantly the peace of mind of knowing I can sleep safely at night) are powerful.

I'm not alone in my desire to innovate, but I'm one of the few that's taking action - for now. There are other patients out there building things and innovating, but they don't know how to connect with each other to take these types of innovations to the next level (or how to find the appropriate resources to do so). There needs to be a conversation about the many types of innovations that are happening quietly at home. There needs to be a gathering place for innovators who are driven by improving health care outcomes, to come together, collaborate, and make a more meaningful impact. And most importantly, ePatients and healthcare providers need to be encouraged to think outside the box - and beyond the known applications of existing medical devices and software. I believe this conversation should start on the stage at MedicineX.

Dana Lewis created and moderates the internationally-recognized #hcsm (health care communications and social media) conversation and community on Twitter. She is also the manager of digital marketing and internal communications for Swedish (in Seattle, Washington), where she implements social and digital health strategies across the organization both internally with employees and externally to connect with patients and improve the patient experience. She is passionate about using technology to facilitate conversations and collaboration to benefit our communities and improve health care. She frequently speaks, writes, and teaches on topics related to the implementation and utilization of social media across health care.

In 2011, Sarah Han had a post-discharge surgical site infection. This painful experience made her realize that there are gaps in the healthcare system and patients have meaningful information to address them. So, she became a patient advisor on a research project that was still in its beginning stages. Using her patient experience as expertise, Sarah brings a patient-centered approach to the project's methods and ensures that things most important to the patient are always represented. Sarah comes to Medicine X humbled and excited to engage with a community that also believes in the power of the patient experience in medical research.

Doug Kanter is the founder of Databetes, a graduate of NYU's Interactive Telecommunications Program, a designer and photographer

At ITP, Doug expanded his creative skills with a focus on interaction design and data visualization. His work has been featured in the BBC, Fast Co. Design, Flowing Data and Quantified Self. His blog of ITP work is available here.

While at NYU Doug launched Databetes, a company developing software to help diabetes patients better manage their condition. As a type-1 diabetic since 1986, Doug is interested in creating new ways to better use medical and lifestyle data to improve health outcomes. Doug led Databetes to a win in the 2013 NYU Entrepreneurs Challenge. Databetes also took part in the NYU Sumer Launchpad and has received support from First Round Capital's Dorm Room Fund. Doug has also been named an ePatient for the Stanford MedicineX conference. He blogs about living with diabetes at databetic.com.

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