Patient Voices Network Blog

Dear Jessie, I am finally taking your advice.

CERTAIN Patient Advisory Network Director Danielle Lavallee introduces a new blog series that focuses on sharing tips, tools, and lessons learned through learning how to engage patients over the years.

“You need a blog.” This advice came from Jessie Gruman, founder of the Center for Advancing Health, when I asked her what peer-reviewed journal to target for a manuscript. Jessie was my first mentor in the world of patient engagement in research. She knew from her own experience as a cancer survivor that patient engagement in healthcare served as the key ingredient for successful health outcomes. A prolific and articulate writer, she focused her work on connecting with people to share actionable tips, tools, and resources for being a prepared and engaged patient. While Jessie believed patient engagement a necessity to improving research, she knew much needed to change in the research culture to reap the benefits - starting with communication.

Jessie’s point in telling me to blog was simple. Academic attempts at communicating to the masses in fact misses the masses. Research jargon, “the publish or perish” thought process, and academic journal paywalls limit, if not eliminate, the ability for patients to access critical information that can support their decision-making about their health. In the present era of smartphones and social media, our ability to communicate and connect are becoming limitless, and the research world is not keeping up.

Jessie offered her advice over 5 years ago and, despite thinking about it often, I am only now taking up her challenge. What took so long? Fear, mostly. In academia, rejection is not uncommon, but it happens through peer review and scripted letters gently informing you that more work is necessary or the fit isn’t right. Blogs require the writer to be succinct and engaging. It also requires a willingness to be vulnerable by putting forth your ideas and experiences. Have you ever read the comments section of a blog? Yikes!

Why now? Because timing is everything. Our resources for research are finite and threatened, yet our need for scientific discovery grows. Now more than ever, researchers need patients and caregivers as partners to improve the quality and efficiency of research and to help spread research results beyond traditional academic circles. Evidence about how partnership improves all aspects of research is growing, but it is still not standard practice. We need to communicate more about our experiences. That means pushing past our academic comfort zones. Through this blog series, I hope to connect with people to share actionable tips, tools, and resources for partnering based on the lessons I have learned along the way. I look forward to inviting discussion on a range of topics. Among them – how my patient partner Mary made me think differently about informed consent, my loathing of the phrase "human subjects," and that time I realized how research writing can ruin relationships.

Crafting this blog is bittersweet. Jessie lost her fight with cancer in 2014. Revisiting archives of her blog as I prepared to write this reminded me of her intensity and passion for making healthcare better for all. In a tribute to Jessie’s legacy a colleague stated, “She created all of us as her spokesperson. She imbued us with the need and desire to be communicators. Her legacy is actually leaving a part of herself in all of us that we are her voice moving forward.” I am so thankful and honored that Jessie, and so many other patients, caregivers, and family members have shared with me their stories, their time, and their partnership over the years. I am a better researcher because of what they have taught me. I hope this blog will spur discussion and discourse about the journey forward. I look forward to continuing the conversation.


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