Let's talk medical research

This is a reprint of an article originally published in the INvisible Project’s 5th edition of their Migraine and Headaches magazine, written by Antidote’s Head of Partnerships and Patient Advocacy, Lindsey Wahlstrom-Edwards.

Diane Kramer first noticed tingling and numbness in various parts of her body in 2000, but it wasn’t until 2010, when she began suffering from cluster headaches and lost all feeling on the left side of her body, that she went to speak with her primary care doctor. Diane, then a nurse, was immediately sent for an MRI which confirmed her diagnosis: Relapsing-Remitting Multiple Sclerosis (RRMS).

This year, Antidote’s New York office is celebrating its fifth anniversary. As we reflect on how we’ve grown over the last half-decade, we wanted to share five lessons we’ve learned about clinical trials patient engagement along the way.

The start of the new year always feels weighty: Who will I be in 2020? What will I achieve? Here’s one tone-setting question for us all to consider: What book will I read first? For an inspirational 2020 kickoff, we recommend David Fajgenbaum’s Chasing My Cure.

In 2014, Stacy Hurt was enjoying a booming career in the pharmaceutical company and life with her husband and eight- and ten-year-old sons. Though Stacy's life was not easy – her youngest son has, in her words, "profound disabilities", and requires around the clock care – her family was thriving.

Lindsey Wahlstrom-Edwards is Director of Partnerships and Distribution at Antidote. She works with health nonprofits and patient advocates to connect their communities with research.

In our Delivering on Diversity series, we’ve spoken with Clinical Ambassador CEO and Founder Allison Kalloo about a variety of topics related to minority engagement in medical research.

Clinical trials help people access tomorrow’s treatments today. In the age of precision medicine and tumor profiling, this statement is particularly true for oncology patients. According to a recent ProPublica article, even in Phase I trials, 20% of clinical trial participants now see a reduction in tumor size, compared with 5% of participants in the 1990s.

Every conversation about minority participation in medical research inevitably winds up with the “T” word – Tuskegee.

At Antidote, we aim to make it easy for researchers and patients to connect. And a big part of that work is creating opportunities for people to learn more about medical research and dispelling myths about medical research participation, both for patients and researchers.