Nearly a year ago, we released our first guide on rare disease clinical research. In it, we were looking to address some important questions facing the people who are committed to improving the lives of patients with rare disorders. While much progress has been made, it is critical that those of us in the health care and life sciences industry remain keenly aware of all that’s being done to further research and improve outcomes. In our latest eBook, “Focus 5: Rare Disease Research. What’s Next?” we reached out to industry experts for their insights on this evolving clinical research landscape.
Can you tell us what led you to start Zaggo and create the ZaggoCare System?
In 2005 my 17 year old son Zachary was diagnosed with a DIPG, a rare inoperable, malignant brain tumor, carrying a survival rate of less than 2%. My world crumbled when we learned Zach had 4-6 weeks to live. We are grateful Zach survived for 27 months, dying at 19.
My experience as Zach’s caregiver made me realize how difficult it is to navigate the medical world. It didn’t take me long to discover that the adage “You don’t know what you don’t know” is an unfortunate part of most medical journeys.
You’ve been committed to improving patient communications and engagement for a long time now. Can you tell us about your work and share your thoughts on what’s needed to bridge the most pressing patient communication challenges?
In 1989, we started an on-line “Medical Mall” in partnership with a non-profit Internet Service Provider Regional Alliance for Information Networking (RAIN) which ended up featured at the Smithsonian and early AOL conferences on health and technology. We have utilized various iterations of web page design over the years including “Ask-A-Doc”, RealVideo with embedded player, RSS health feeds, and blogs to look at asthma, obesity, COPD, developmental screening, cystic fibrosis, and public health issues. We were early adopters of live video-teleconferencing, embedded viewers, and continue with our YouTube channel GetMovingTV. We have provided patient material in English, Spanish, and Mixteco (which has no written language). We have placed downloadable apps related to asthma, obesity, and diabetes, linked in hip-hop songs about health, Twitter feeds around healthy food, and on-line and in classroom gamification, My Healthy World. We have entered technology and health partnerships with the Bill and Melinda Gates Foundation around International immunization, Aetna Foundation around obesity, Blue Cross Foundation around asthma, and the list goes on. Bottom line, there has been no health and technology “magic bullet” in all these initiatives.
Topics: Patient Engagement
Patient centricity has become an essential element of modern healthcare – in part thanks to the tenacity of patients and caregivers. They have advocated for a place at the table with sponsors and researchers in the drug development process, informing clinical and therapeutic research with much-needed patient voice and perspective.
Too often the word “innovation” conjures a negative response and is synonymous with big change and a total disruption. But innovation is really just the process of translating an idea into a product or service that brings value to a consumer willing to pay for it. It can and should be simple, in both the front and back end.
If you attended our recent webinar “Harnessing the Power of mHealth for New, Better Data and Improved Patient Engagement” you had the opportunity to submit a question to BBK President Matt Kibby or Roche Operational Intelligence Leader, Lewis Millen, during the webinar’s Q&A portion. We received so many great and thoughtful questions from our attendees, that we were, unfortunately, unable to address all of them. Today, we are happy to share Matt’s responses to many of those questions here, and we hope you find his answers useful.
During last week’s webinar with BBK President Matt Kibby and Roche’s Operational Intelligence Leader, Lewis Millen, on “Harnessing the Power of mHealth for New, Better Data and Improved Patient Engagement,” we had the opportunity to cover a variety of topics and challenges related to mHealth adoption and deployment. And we were pleased to have so many representatives from all areas of clinical R&D, including patients, join us. Lewis was able to provide such valuable insights and if you joined us, you know that first hand.
At BBK Worldwide, we are committed to improving patient engagement through patient-centric technologies and best-practices. Alongside our clinical research partners, we work to boost clinical trial awareness and simplify the clinical trial experience for patients and sites. As the healthcare industry reaffirms its commitment to improving the pathways to improved clinical research, BBK will host Harnessing the Power of mHealth for New, Better Data and Improved Patient Engagement, a webinar to discuss what's needed to leverage the power of mHealth and related technologies to the benefit of the study and the study patient on Friday, October 28, 2016 at 12:00 p.m. ET.
About this time each year I blog about how much I hate cancer. This year, it’s a bit tougher as my father was diagnosed with advanced head and neck cancer in June. Once again I am reminded about the difference it makes to be knowledgeable about clinical trials when making treatment decisions. We ask more questions. We explore more options. We filter what we hear through experience. And, we know when the informed consent process isn’t being done well – or even in compliance with regulations.
Over the past 5 years, digital and mobile health technology has evolved to become an indispensable tool for many professionals across the healthcare industry, improving care delivery and expanding access to useful data streams. mHealth apps, wearables and telehealth all come to mind when we think of the industry’s latest innovations, and today, we’ll be discussing another kind of technology that brings an entirely unique dynamic to the healthcare landscape. Hoolux Medical is a company that specializes in medical applications for face detection technology. With a self-contained smart box that sits in a waiting room, Hoolux Medical looks to elevate patients’ health literacy levels by delivering engaging and informative content. We interviewed CEO Ian Gallagher to weigh in on the capabilities of his company's technology and what it means for patients and medical professionals.