PCORnet Engagement Committee

 

Rebekah S.M. Angove, PhD

Rebekah Angove serves as the Associate Director of Health Services Research at the Louisiana Public Health Institute (LPHI) where she provides leadership in the area of community and stakeholder engagement in research. Dr. Angove is the Director of Engagement for Research Action for Health Network (REACHnet, PCORnet CDRN, and PI on a PCORI funded Engagement Award to develop medical student trainings in patient engagement and patient centered outcomes research (PCOR). With formal training and experiential expertise in Community Engaged Research, she has worked closely with health systems to develop strategies that integrate principles of patient engagement into clinic-based research and care. In addition to serving on the PCORnet Engagement committee she contributes her expertise to a number of other community-based and clinical research projects and advisory groups.

 

Cherie C. Binns, RN, BS, MSCN

Cherie Binns comes to this project with four decades of nursing under her belt in addition to a degree in gerontology and has been a Multiple Sclerosis Certified Nurse since 2003 continuously. The Multiple Sclerosis PPRN, where she serves on the Research Committee recommended her to the PCORnet Engagement Committee. Additionally Cherie is a PCORI Ambassador. She conducts patient educational programs for various nonprofit organizations and is a “resource finder” for clients who engage her services when developing plans of care or adjusting to a change in status in health. Cherie has been trial coordinator on two multiple sclerosis arena phase I trials and has had training for Phase IIIc and d trails on medications for treatment of multiple sclerosis. She is an independent practitioner working nationwide from her home in southeastern Rhode Island. Married to David for 41 years, the couple has two adult daughters and four grandchildren. Well-connected to Multiple Sclerosis Centers and personnel throughout the USA, she has relationships with Centers doing clinical trials and can act as a liaison. Cherie was diagnosed with relapsing remitting MS in 1994.

 

Meryl Comer

Meryl Comer is president and CEO of the Geoffrey Beene Foundation Alzheimer’s Initiative, which promotes early diagnosis, virtual innovation challenges, mhealth technologies and national public service campaigns like Geoffrey Beene’s Rock Stars of Science™.

A co-founder of WomenAgainstAlzheimer’s (usagainstalzheimers.org), Comer is the recipient of the 2015 Lauder Alzheimer’s Drug Discovery Fund “Great Ladies” Award, 2014 Wertheim Global Medical Leadership Award, 2007 Proxmire Award and 2005 Shriver Profiles in Dignity Award.  In 2012, she led the formation of the 21st Century BrainTrust® (21CBT), a non-profit partnership to advance mobile health technologies and brain health.

Comer has used her media expertise as an Emmy award–winning reporter, veteran TV producer/ business talk show host, and 20 years as a caregiver to co-launch a virtual Health-eBrainStudy that looks at the impact of caregiving on caregivers. She is also co-principal investigator for the PCORI Alzheimer’s Patient/Caregiver Research Network in partnership with the Mayo Clinic, UCSF’s Brain Health Registry, and USAgainstAlzheimer’s Networks. Comer has been the subject of primetime news stories by ABC’s Nightline and the PBS NewsHour with Jim Lehrer.

One hundred percent of proceeds from her New York Times Bestseller book, Slow Dancing with a Stranger (merylcomer.com) will support Alzheimer’s research.

 

Jennifer Jo Erickson

Jen Jo puts her B.A. in Humanities/Sociology to use by “being very social with humans” through many patient advocacy roles and social media. She has honed her communication and support skills through life experience as the wife of a self-employed Handyman and a stay at home mom to 3 busy daughters. Much of her life has been spent as a patient herself, and as the primary caregiver for her daughters and her parents. She has helped family members battle Orthopedic abnormalities, Endometriosis, Pediatric Stroke, Cerebral Palsy and Epilepsy, Turner’s Syndrome and Ulcerative Colitis, Diabetes, Multiple Myeloma, Kidney, Liver and Skin cancers. She is a Parent Partner for Improve Care Now and Northwest Pediatric Gastroenterology at Randal Children’s Hospital in Portland, Oregon, as well as a Parent Leader for ICN serving on the conference planning and engagement committees, a CCFA support group facilitator, and a member of the Engagement Committee for PCORnet.

 

Michael Alan Horberg, MD, MAS, FACP, FIDSA

Michael Horberg is Executive Director Research, Community Benefit and Medicaid Strategy of the Mid-Atlantic Permanente Medical Group and the director of the Mid-Atlantic Permanente Research Institute. Dr. Horberg serves as director of HIV/AIDS program-wide for Kaiser Permanente and as Clinical Lead for HIV/AIDS for the Care Management Institute. He has served on the Presidential Advisory Council on HIV/AIDS, and co-chaired the Access to Care and Improved Outcomes Committee. Dr. Horberg is a Fellow of the American College of Physicians and the Infectious Disease Society of America. He is Past-Chair of the Board of Directors of the HIV Medicine Association of the Infectious Disease Society of America, and is a commissioner of the State of Maryland Natalie M. LaPrade Medical Cannabis Commission. He is past-president of the national Gay and Lesbian Medical Association. Dr. Horberg has published over seventy-five manuscripts and delivered over one hundred presentations at scientific meetings. Dr. Horberg graduated from Boston University’s College of Liberal Arts and School of Medicine and completed his internal medicine residency at Michael Reese Hospital in Chicago. He received his Master of Advanced Studies from University of California San Francisco.

 

Kim Kimminau 

Kim Kimminau has worked throughout her career with nonprofit organizations, medical providers, advocates and nonprofits trying to meet the health needs of communities.  Her training as an anthropologist and the fieldwork and experiences she has had in practice-based research, evaluation, patient and community engagement and health policy provide her with skills and insights needed to work in partnership with many others to achieve health improvements. Kim has 25 years of experience managing large scale, multi-site projects in the public and private sector. Her research areas of interest are in health services research and comparative effectiveness studies, specifically evaluating ways to improve the delivery of primary care to vulnerable populations. She is the co-director, with patient partner Cheryl Jernigan, for patient engagement for the PCORI-funded Clinical Data Research Network project, the Greater Plains Collaborative.  Kim has been the Clinical and Translational Science Award, Frontiers, co-director of community and patient engagement since 2012.  At the American Academy of Family Physicians National Research Network, she works with primary care practices across the country on how to involve patient perspectives to improve clinic operations and how to recruit patients to participate in clinical trials and other research. Kim is the principal investigator for one of eight national AHRQ funded P30 Centers of Excellence in Practice Based Research awards.  For the past three years, she’s facilitated the PAINS KC patient/citizen leader group, and is their principal scientific advisor. Kim is the mother to two University of Kansas students, she raise’s puppies for KSDS Assistance Dogs, Inc. and enjoys traveling, kayaking and cooking.

 

J. Kiely Law, MD, MPH

Kiely Law is co-founder and Research Director of the Interactive Autism Network (IAN), a participant-powered research initiative focused on improving the lives of children and adults with Autism Spectrum Disorder (ASD). Since its launch in 2006 at the Kennedy Krieger Institute, IAN has engaged more than 50,000 individuals in ASD research. Kiely is the Principal Investigator for IAN’s PCORI award and is responsible for developing and implementing the network’s research activities. Advancing ASD research is both a professional and personal mission for Kiely. In 1996, her son was diagnosed with autism at the age of three. As the Mom and caregiver of a young adult with ASD, she knows the unique value of information collected directly from those living with the struggles and triumphs of autism every day. Kiely received her medical and public health training at Johns Hopkins University and is a Research Associate in the Department of Pediatrics at the Johns Hopkins School of Medicine.

 

Sharon F. Terry

Committee Chair

sterry@geneticalliance.org

Sharon Terry is President and CEO of Genetic Alliance, a participatory enterprise engaging individuals, families and communities to transform health. She cofounded PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), in response to the diagnosis of PXE in her two children in 1994. With her husband, she co-discovered the ABCC6 gene, patented it to ensure ethical stewardship in 2000, and assigned their rights to the foundation. She subsequently developed a diagnostic test and conducts clinical trials. She is the author of 150 peer-reviewed papers, of which 30 are clinical PXE studies. She is Co-PI of the PCORnet Coordinating Center and Chair of the PCORnet Engagement Committee. She is at the forefront of engagement in biomedical research, services and policy; she serves in a leadership role on many of the major international and national organizations, including PMI and Moonshot. Terry is an Ashoka Fellow.

 

Nate Warren, MPH

As ADVANCE’s Engagement Coordinator, Nate strives to be a champion of the patient and clinic’s needs, perspectives and desired health care systems experiences, as well as a translator of those needs to PCORnet, the ADVANCE CDRN and OCHIN, Inc. This position is a creative resource in best practices in stakeholder engagement healthcare (research, governance structure, technological tools), and serves as a critical communication conduit for ADVANCE, its members, and its partners. Nate leads the Patient Engagement Panel, Clinic and Patient Engagement Workgroup and coordinates the Practice-Based Research Network, as well as guiding national efforts through the PCORnet Engagement Committee and other structures. Nate completed his Master’s of Public Health from Oregon Health and Science University in September 2013 and joined OCHIN in April 2014 with a focus on clinic and patient engagement, health communications, primary care and health disparities.

 

Neely Williams 

Neely Williams has lengthy experience in working with persons challenged with the social determinants of health. She worked as the project coordinator and later the program director of the First Response Wellness Center at Metropolitan Interdenominational Church in Nashville TN. The First Response Center provides primary care and other social services for persons living with HIV/AIDS such as housing assistance, substance abuse and addiction treatment, harm reduction, and mental health counseling, as well as services for the homeless population in Nashville.

Williams served as the community liaison for the Nashville Urban Partnership, Academic Center of Excellence (NU PACE) project at Meharry Medical College and Chair of the Nashville Community Coalition for Youth Safety. In this role, she provided administrative support and carried out community mobilization and outreach strategies in targeted communities. She strived to promote an academic and community partnership that integrates prevention with community action. 

Neely Williams is currently the administrator of the Community Partner’s Network (CPN). The CPN is a network of community experts with a broad range of experience in providing social services and management for non-profit Faith-Based organizations. The mission of the CPN is to improve and increase service delivery in economically oppressed and highest crime areas of Metropolitan Davidson County. She has held pastoral positions with the Jefferson Missionary Baptist Church, Metropolitan Interdenominational Church, and the Old Ship of Zion Church, which has spanned over 25 years of service to Faith Congregations, and presently serves on the pastoral staff of New Unity Church as the Pastor of Community Concerns

 

Pluscedia Williams

Pluscedia “Ms. Plus” Williams, has a faculty appointment as a Community Instructor and a community representative of the Institutional Review Board at Charles R. Drew University of Medicine and Science; adviser for Healthy African American Families II (HAAF II), completed Black Studies and continues her education in psychology and public health; over 25 years of experience working in communities plagued with social and cultural determinates of health care inequalities. Her goal is to create opportunities for researchers to build a coalition between communities, community based organizations and academia.

Her expertise is in engagement through involvement in community-academic research collaborative such as building wellness, pre-term and diabetes working groups, as well as the Cancer Community Academic Council. Ms. Plus is a Published Author in several journals and recently received the 2015 Landmark Award and the 2014 Joint Team Science Awards from The Association for Clinical & Translational Science and the American Federation for Medical Research.

She is a member of the Scientific Advisory Council (SAC) of UCLA/Harbor BioMed, of the RTRN IRB Harmonization Sub- Committee and active member of Community Partners in Care (CPIC). Nationally, Past President of the National Community Based Organization Network (NCBON); co-organized a Learning Institute (LI); first Community co-sessions planner for associated conference activities in conjunction with the American Public Association (APHA) in Boston, a member of PCORnet Engagement Committee, has served as moderator/facilitator and presented at national conferences and forums. In summary, She has exercised leadership and motivation necessary to successfully carry out proposed work.

 

Last updated on June 2, 2016