Digital, mobile, programmatic. These terms have become buzzwords in our industry when discussing new and emerging trends in patient recruitment support. However, for me, the most interesting part of these concepts is not the way in which programming display ad buys work, or the mobile trends we are seeing with users in different age groups. When you consider that that these advertising vehicles have been in use for almost a decade, what’s most interesting to me is that the healthcare industry is just starting to adopt these as viable tactics for patient recruitment.
Supporting rare disease research is a big part of our work here at BBK and rare disease recruitment is an expertise that our sponsors and CRO customers have come to expect from us.
While progress has been made to improve the lives of patients with rare disorders, there is much that still needs to be done to reach patients, further research, find new treatments and improve outcomes. Our most recent eBook, “Rare Disease Research. What’s Next?” is a collection of insights from a variety of rare disease stakeholders, including Roberta Carson, Founder and President of Zaggo, Inc. – a national nonprofit devoted to helping patients and families be more engaged members of their medical teams.
Name something that happens to you five times every waking minute. Give up? It’s advertisements. The average person is exposed to approximately five ad messages every minute, for a total of about 3000 to 5000 advertisements a day. From TV and radio commercials to surfing the web to walking around your local grocery store, the flood of advertisements trying to grab your attention has never been greater. So here are two questions I want you to consider: how many of those ads do you remember and did they motivate you to take action?
Medication non-compliance is an epidemic that impacts patients, sponsors and the healthcare industry at large, costing the U.S. healthcare system around 300 billion dollars a year. According to a PM360 article that highlights medication compliance in diabetes patient populations, non-adherent patients have inpatient healthcare costs that are 41% higher than those of adherent patients.
The clinical research industry is unique among other industries for many reasons. Yet in the bigger picture, the way we interact with information has evolved, more or less, in step with the rest of the world. I can see parallels between changes in my own life and how clinical trials, and patient recruitment and engagement, have changed over the years.
It’s the greatest time of the year, well at least in my opinion. It’s March Madness. For those of you who don’t know, every year in March the NCAA basketball tournament captures the eye of the sporting world, consisting of brackets, upsets, buzzer beaters, and heartbreak.
Where am I going with this? As I sit in my office, I think about some of the biggest issues that face the clinical trial industry regarding the adoption and implementation of new products.
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.