In an age where patients have more choice about treatment options (just think about how the treatment guidelines have evolved for multiple sclerosis or rheumatoid arthritis in the last 10 years for example,) and more clinical trials are being conducted by fewer investigators, there has been a constant upward pressure on competition for clinical trial patients, even as sponsors and third party recruitment companies becomes more innovative and proactive in their approaches to marketing their trials.
It’s clear that the clinical team for each study is tasked with creating and managing an individual study budget. The problem is one-off study purchases do not accrue the benefits of volume discounting. Of course, there are numerous and complicated financial arrangements sponsors make with service providers to create optimal rates for clinical trial support – but what about the simple construct of, “buy one shirt, get another for free?”
At this stage in the evolution of mHealth, how do we make it easier for sites and patients to stay engaged with a clinical trial? In this interview, BBK Worldwide’s Erica Mercado provides her insights on mHealth user experience optimization, adaptive engagement strategies, and mHealth’s integrated future.
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
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.
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.
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?”