News & Updates
Face to Face Meeting Hosted by Duke
On October 4, Duke hosted a face to face meeting for the Mid South Clinical Data Research Network. Topics discussed included Marketing and Outreach, Stakeholder Engagement, Informatics, Sustainability, and the forthcoming PCRF. All the attendees enjoyed hearing remarks and presentations from Drs. Iain Sanderson, Russell Rothman, Jacquie Halladay, Rob Califf, Crystal Cene, Arlene Chung, and Tim Carey, as well as Kellie Walters, Keri Wolfe, and Melissa Basford.
Dr. Iain Sanderson of Duke University welcoming the attendees.
Dr. Rob Califf of Duke University reporting on the significance of the work our CDRN is doing.
Dr. Russell Rothman of Vanderbilt University Medical Center presenting on Mid-South CDRN clinical reach.
Kellie Walters and Jacquie Halladay of UNC Chapel Hill giving a CDRN Marketing and Outreach update.
Mid-South CDRN Stakeholder Engagement Team representatives attending the annual Mid-South CDRN Face-to-Face meeting in Durham, North Carolina. Pictured from back row left: Kellie Walters, Bob Stevens (Patient Investigator), Tene Hamilton-Franklin (Stakeholder), Jacquie Halladay and Janice Wells (Stakeholder); front row from left: Jacquelyn Favours and Rowena Dolor.
ADAPTABLE and the Patient Experience
Recently, Linda Brown from Columbia, TN shared her story with the ADAPTABLE Team. Here’s what she had to say:
“Fortunately for me, my heart disease has been relatively minor. A single event and new medication has made my life relatively unchanged. However, my family history has a different story. All male members on the paternal side of my family have had early cardiac problems with many early deaths. My father had his first heart attack at age 39 and passed away at age 65 after bypass surgery, several more heart attacks, and two major strokes. For as long as I can remember, watching my father take a deep breath or lay his hand on his chest would stop me in my tracks. I was always worried it could be his last day. And, soon my worry was about my brothers, uncles, and cousins who, one- by- one became victims of heart disease.
When I was asked to become part of the ADAPTABLE study it was like a call home. I thought maybe I could help other cardiac patients. Every month of work with my fellow Adaptors, I have become more comfortable in a world of research that is very far from anything I have done. Dipping my toe in this pond has been rewarding in many ways that have ended up improving my life. In a way this has become a hobby for me. Right up there with sewing and reading, decorating and gardening, ADAPTABLE is a joy in my life.
Recently I have become a PCORI Ambassador. That has piqued my interest in what a difference this Southern California Valley Girl can make and adds another layer in learning about this new world.
In the last five years I have focused on being the best I can be. For me I must concentrate every day on healthy diet and exercise to keep my mind in a healthy place. I have lost nearly 70 pounds. I make a daily effort to reach 10,000 steps, and I try eating a healthy diet.”
For more about the ADAPTABLE study and to view a video of Linda, please see the ADAPTABLE study website.
Mid-South CDRN a part of 11 Announced Collaborative Research Groups by PCORnet
Mid-South CDRN Co-PI Tim Carey speaks on the importance of Collaborative Research Groups for patients and clinicians.
The Mid-South CDRN will co-lead 3 of the 11 announced PCORnet Collaborative Research Groups (CRGs). The CRGs bring together experts from multiple networks to generate high-priority research questions that will focus on providing patient-centered outcomes. The CRGs will be dedicated to engaging advocates, partner networks, and funders to answer these questions using the PCORnet infrastructure. To focus on specific research topics, some the CRGs have developed Research Interest Groups (RIGs) to investigate sub-categories of their research area. The CRGs will develop data elements that are relevant to the group’s focus area, as well as advance the PCORnet mission of advancing the science of patient-centered outcomes and pragmatic research through innovative methods. Mid-South will lead the Diabetes and Obesity, Kidney Health, and Hospital Medicine CRGs. For more on the PCORnet CRG launch click here.
Mid-South participates in the ADAPTABLE Kick-off Meeting
The Mid-South CDRN participated in the ADAPTABLE study kick-off meeting in Washington, DC on October 28th. The meeting was attended by patients, clinicians, and research staff, which allowed for a very interactive and collaborative kick-off meeting. The meeting included a panel discussion with the patient partners, as well as a panel discussion with the Principal Investigators and Co-Principal Investigators. Recruitment for the study has seen an increase over the last several weeks, with efforts largely being led by Mid-South. ADAPTABLE has 446 participants enrolled to date.
Mid-South CDRN PI, Dr. Russell Rothman, presents at ADAPTABLE study kick-off meeting.
ADAPTABLE patients, clinicians, and research team pose for a group photo
Neely Williams, Patient Investigator, Pens Op-Ed for The Tennessean
The Rev. Neely Williams wrote an op-ed, published by The Tennessean, calling for a louder patient voice in clinical research.
“The harsh reality is this: If we are from a community or population that is consistently underrepresented in the clinical research process, we are expected to simply make do, to accept the knowledge gaps around our unique situation and hope for the best outcomes.”
In the article, she urges communities to build bridges of trust with the medical community and accept PCORnet’s invitation to make clinical research a two-way street.
Click HERE to read the article.
Mid-South CDRN Stakeholder Engagement Team Member, Neely Williams Featured as Patient Advocate in PCORnet Video
Neely Williams, a member of our Stakeholder Engagement Team, shares why she was a natural fit for the PCORnet Bariatric Surgery Study. As a patient and a health advocate, she recognizes that clinical research outcomes are for all stakeholders. From clinicians, to the patients they serve. “Everybody wins, if we are able to develop a better process,” she shared as her hope for this project.
Mid-South CDRN represented at the Building Trustworthiness in PCORnet conference
Dr. Consuelo Wilkens and Dr. Cuffe, along with stakeholders Neely Williams and Bob Stevens, recently attended the Building Trustworthiness in PCORnet conference in Washington, D.C. on March 28-29th. In clinical research, we often ask: why don’t they trust us? This puts the burden on the patient/participant. Instead, the question is: how are we trustworthy? The focus of this workshop was to explore this question. PCORnet hosted a dynamic workshop to begin a critical dialogue about ethics, trust, and engagement, not just for PCORnet, but clinical research overall. Presenters catalyzed a broad dialogue about these issues by listening deeply to communities (the experts in this topic) and examining examples from inside and outside of health. The purpose of the sessions was to foster meaningful discussion through provocative, brief presentations, and the participant discussion.
Click HERE to read more about the meeting.
PCORI – Cycle 3 2015 Funding Announcements
On October 12, 2015, PCORI posted 10 PCORI Funding Announcements (PFAs) under Cycle 3 2015, which invite applications for studies under their five national priorities for research, four targeted projects and Pragmatic Clinical Studies. Click the links below to find out more about each PFA, key dates for submitting Letters of Intent (LOI), applications, dates for our applicant town halls, and other helpful resources.
Group Health Research Institute/Neely Williams Co-PI Approved for $4.5 Million for Obesity Study
Neely Williams Co-Principle Investigator (Co-PI) with Group Health Research Institute in partnership with the Mid-South CDRN has been approved for a three-year $4.5 million funding award by the Patient-Centered Outcomes Research Institute (PCORI) to study Obesity. The study aims to produce results faster and more efficiently by using PCORnet, the National Patient-Centered Clinical Research Network. Reverend Williams is from Nashville and has been involved as an advocated for patients and their perspectives in research through her work as the Patient Investigator with the Mid-South CDRN. Her work has allowed her to have an impact on a national level, including her role as Co-Principle investigator on this project. Please click here to learn more about PCORI’s obesity observational research initiatives.