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.”
Our “Focus 5” eBook series, in which we share the insights of five thought leaders on a variety of industry topics and trends, has been incredibly well-received, and we’re pleased to issue the latest installment in the series on Rare Disease Research. Patient advocates, researchers and physicians from NORD, Xenon Pharmaceuticals, Landon Pediatric Foundation, Rare Genomics Institute and RareShare.org all weigh in on where we are today and what we can do to help advance research.
A city where women make on average .83 for every dollar earned by men, Boston is taking steps to close the wage gap through “100% Talent: The Boston Women’s Compact.” The compact is a voluntary pledge that more than 100 Metro Boston-based organizations have already signed, indicating their promise to close the gender wage gap in the workplace. Salary data will be collected and analyzed and companies will have access to research-driven tools and support to address pay gaps and inequities. Proudly, it’s also the first initiative of its kind in the country.
A few weeks ago, we attended NORD’s 7th Annual Rare Disease Day in Boston. People impacted by rare diseases, including patients and patient advocates, industry thought leaders and legislators, gathered at the State House to help raise awareness of the impact rare diseases have on the lives of millions of people in the US and around the world.
Late last month, BBK hosted the webinar Rare Disease 20/20: A Look at the Challenges and Opportunities in Rare Disease Clinical R&D giving our listeners the opportunity to gain insights from thought leaders in rare disease patient advocacy and orphan drug development.