blog

Guest Spotlight: Annie Finstein A Message to the Medical Community

By Beth Davis Heppenstall on Tue, Feb 5, 2019 | 5 min read

Rounding out our Study Voices panel for BBK's keynote “Do Engagement Tools Live Up to Their Hype?” is panelist, Annie Finstein. She is looking forward to sharing her experience as a patient and participant in a clinical research study on February 19 at the SCOPE conference. 

Annie was diagnosed with Crohn's disease in 2000 at nine years old. After trying all available medications approved for pediatric patients at that time, she participated in a pediatric study at Massachusetts General Hospital in Boston. Now in her late 20s, she enjoys spending time at the beach, hiking, cooking and gardening at her home in Boston. Annie is committed to making a difference and connects with other patients impacted by Crohn’s disease by running half marathons with Team Challenge, the Crohn's & Colitis Foundation’s endurance training and fundraising program.Annie_Finstein

What was most rewarding to you as a participant in a clinical research study?

It was most rewarding to know that I was helping advance the treatment of Crohn’s disease for pediatric patients, and that my participation might not only help me but also other kids suffering from inflammatory bowel disease (IBD).

Topics: Patient Recruitment, Patient Retention, BBK Worldwide, Patient Engagement, Patient Centricity, Conferences, Patient Experience, Patient, clinical trials, Patient Advocacy

A Caregiver's Perspective on Rare Disease Clinical Trials

By Juli Greenwood on Thu, Apr 27, 2017 | 4 min read

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.

Topics: Patient Advocacy, Patient Engagement, Patient Experience

Listen Now - Rare Disease 20/20: A Look at the Challenges and Opportunities in Rare Disease Clinical R&D

By BBK on Tue, Mar 15, 2016 | 1 min read



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.

Topics: Webinars, Patient Advocacy, Rare Disease

The Importance of Advocacy Outreach for Patient Recruitment

By Aaron Fleishman on Tue, Aug 25, 2015 | 3 min read

Partnering with advocacy groups is a vital component to any clinical trial outreach effort. The approach to working with advocacy groups has changed in recent years. It is not just about the one connection you may have with one organization. These days it’s about working with the condition community as a whole for one common goal. Advocacy groups often have direct connections to people affected by a condition and can be highly beneficial to enrollment throughout the patient recruitment process.

Topics: Patient Recruitment, Patient Advocacy

Rare Disease Day Highlights Impact of Disease on Lives of Patients

By BBKWorldwide on Sat, Feb 28, 2015 | 2 min read

Today is Rare Disease Day. Launched by EURORDIS and its Council of National Alliances in 2008, this annual event has grown to include a record-breaking 84 countries from around the world that have come together to raise awareness among the general public and decision makers about rare disease and its impact on the lives of patients.

Topics: Patient Centricity, Patient Advocacy, Rare Disease

Why Clinical Trials Matter To People With Diabetes

By BBK Worldwide on Wed, Feb 18, 2015 | 4 min read

This week's blog comes from our friend Christel Aprigliano of thepefectd.com. Thank you for contributing!

Topics: Patient Centricity, Patient Advocacy

I Hate Cancer, Part Two

By Bonnie A. Brescia on Wed, Feb 4, 2015 | 2 min read

Today is World Cancer Day. Eighteen months ago, my dear friend Sarah Montgomery died of colon cancer and I posted the original “I Hate Cancer” blog. I still miss Sarah very much, but she was only one of many people I mentioned in that post. Since then, my friend died from her metastatic brain cancer, my aunt died from adenocarcinoma, and every one of my friends then in treatment for breast cancer has survived and is doing very well. One even gave birth to her third child.

Topics: Patient Centricity, Patient Advocacy

Breaking Through the Noise: Insights into Cutting-Edge Advertising in Clinical Research

By Matthew Stumm on Wed, Nov 5, 2014 | 5 min read

"I Wish I Had Breast Cancer"
Meet Kerry Harvey. 24 years old. And diagnosed with pancreatic cancer – a cancer with which she only has a 3% chance of living another 12 months. Kerry wants you to know that she suffers from “cancer envy” (Pancreatic Cancer Action). She never imagined she’d feel envious of someone suffering from breast cancer, a condition with an 85% survival rate, but Kerry faces the grim prognosis of metastatic pancreatic cancer, a condition with an average life expectancy of up to six months and one that only receives 1% of research funding.  

Yes, the strap line is hard hitting and may even offend someone but it does compel you to read on – which is what we need people to do if we are to change the fortunes of pancreatic cancer (Ali Stunt of Pancreatic Cancer Action).” 

Topics: Patient Advocacy, Branding and Advertising, Conferences

Watch Now: Patient Centricity Insights from The Michael J. Fox Foundation & The Diabetes Collective

By BBK Worldwide on Thu, Oct 16, 2014 | 1 min read

If you're not putting your patients first, someone else will. Yesterday, BBK hosted a webinar on patient centricity in clinical research. The webinar, Patient-centric to the Core: Setting a New Standard for Engagement Strategies in Clinical Research, addresses the topic of how patient centricity is no longer a nice-to-have; it is a critical component of any study's success.

Topics: Webinars, Patient Centricity, Patient Advocacy

The Michael J. Fox Foundation & The Diabetes Collective to Weigh in on Patient Centricity and Clinical Research

By BBK Worldwide on Tue, Oct 7, 2014 | 5 min read

If you’re not putting your patients first, someone else will. Patient-centricity is no longer a nice-to-have; it is a critical component of any study’s success. Thoughtful and effective patient engagement and retention strategies should be employed throughout the entire clinical trial process – and the patient’s contribution to clinical research and the advancement of treatment options cannot be underestimated. Regardless of the inherent complexities of study management, clinical trial sponsors have an obligation to ensure patients have the best clinical trial experience possible. 

Topics: Webinars, Patient Centricity, Patient Advocacy

 
Subscribe To Our Blog