It’s been about a year since we released our first Focus 5 eBook on mHealth, and in that time much has changed in the digital health landscape. With a clearer understanding of the benefits, organizations are eager to integrate mobile health solutions to steamline patient care, and stengthen patient recruitment and engagement programs, while tech innovators continue to advance and refine these technologies for optimal clinical use. Now that mHealth has entered this next phase of adoption and development, it’s the perfect time to see where we are and where we still must go.
You might remember the story from earlier this year about baby Teegan Lexcen. Born with just one lung and half a heart, and a defect so rare that doctors hadn’t come across it before, Teegan was sent home with hospice and not expected to live beyond a month or so. After a few months Teegan was still fighting and her parents sought a second opinion. Through some online research they found Dr. Redmond Burke, the chief of cardiovascular surgery at Nicklaus Children's Hospital in Miami, who agreed to help. Burke turned to Dr. Juan Carlos Muniz, a pediatric cardiologist who specializes in imaging, to make a 3-D model of Teegan's heart.
Yesterday was the final day on the exhibition floor at the DIA 2016 Annual Meeting. Between the thought-provoking presentations, networking, and interacting with attendees at our booth, it has been, as it always is, a great experience. Adding to the buzz at our booth and Innovation Theater presentation – this year, we were pleased to make two big announcements..
We are once again looking forward to an insightful week at DIA 2016 52nd Annual Meeting, which starts this Sunday in Philadelphia. With over 7,000 life sciences professionals from across all disciplines expected to attend, it’s always a week full of inspiring discussions on advancing research and development in science and health care.
Four years ago, my colleague and management team member here at BBK Worldwide, Rob Laurens, wrote the blog post, “How a Poster Enrolled my Clinical Trial.” I re-read it recently and thought it would be fun to look back on this article to see how our ideas about patient engagement and enrollment may have changed over the last few years thanks to technology and the rise of mHealth.
If you follow Humans of New York (HONY) on Facebook – and with more than 17 million followers, I expect you do – then you’ve been inspired by and often heartsick over this week’s stories told from the Pediatrics Department of Memorial Sloan Kettering Cancer Center.
At last, patient centricity is much more than an industry buzzword. We’re seeing real efforts to put patients at the center of clinical research, and it’s beginning to impact all areas across the clinical research continuum.
For this week’s Guest Blog Spotlight and in recognition of Clinical Trials Awareness Week, we’re sharing insights on improving patient engagement from Rare Genomics Institute and Rareshare.org, and contributors to our recent Rare Disease eBook. We asked Rare Genomics CEO Paul Schindler, Director of Strategic Alliances Nolin Huddleston, and Rareshare.org’s Head of Operations and Development Alice Cheng, “How can sponsors take a more active role in building and supporting rare disease communities?”
“We know today that we can define the root cause of genetic diseases. We have a growing toolkit with which to we can aggressively tackle and modify the underlying defect, which ultimately I believe will lead to benefits for the patients, improving their quality of life, and potentially for some, it may lead to cures.”
“When so many rare disease patients commit themselves to becoming experts of their condition, sponsors must also strive to understand and collaborate with the patients they wish to engage.”