Jerry Matczak Everyone Included plenary session 2019

JERRY MATCZAK EVERYONE INCLUDED PLENARY SESSION

Simon Denegri, OBE and Kristen Honey, PhD to keynote

Simon Denegri, OBENational Institute for Health Research (NIHR) National Director for Patients, Carers and the Public

Kristen Honey, PhDSenior Research Scientist, Stanford University School of Medicine

About Simon Denegri, OBE

Simon Denegri OBE is National Director for Patients, Carers and the Public in Research at the National Institute for Health Research (NIHR). He served as Chair of INVOLVE – the national advisory group for the promotion and support of public involvement in research funded by NIHR – from 2011 until 2017. He was Chief Executive of the Association of Medical Research Charities (AMRC) where he served from 2006 until 2011 and, prior to this, Director of Corporate Communications at the Royal College of Physicians from 2003. He also worked in corporate communications for Procter & Gamble in the United States from 1997 to 2000. He writes and speaks extensively about community and public involvement in health and social care and blogs at http://simon.denegri.com/ He also writes poetry which he publishes at http://otherwiseknownasdotcom.wordpress.com/ He was awarded the OBE in the Queen’s Birthday Honours 2018.

About Kristen Honey, PhD

Kristen Honey, PhD is Senior Research Scientist, Stanford University School of Medicine. Kristen earned her PhD at Stanford University in the Emmett Interdisciplinary Program in the Environment and Resources, School of Earth Sciences, while simultaneously earning a PhD minor in Civil and Environmental Engineering from Stanford University. Kristen holds an MA in Environmental Studies from the University of California, Santa Cruz, and a BA in Human Biology with Honors from Stanford University. She is originally from Portland, Maine, and the small community of Long Island, Maine, in Casco Bay.

Traditional clinical research begins with investigator-initiated concepts that translate to patient participation at the bedside or in the clinic room. How might we shift our focus from the existing research model towards a more collaborative one? What shifts in ways of thinking and doing are needed to create opportunities for patients and caregivers to contribute meaningful expertise together in clinical research? Learn how researchers, patients and the public share expertise as they partner through Everyone Included™ co-production in medical research.

In the changing landscape of Big Data, Artificial Intelligence, patient-generated data, and even self-experimentation: how are the boundaries of research and collaboration being redefined for the 21st century? In the shifting sands of research, is there room for patients themselves to lead research efforts? Is co-production in research defined by traditional roles, or by the expertise people on the team have to contribute to the effort? Is self-experimentation research? Are such efforts bound to the same ethical and scientific standards as traditional research? Is there a role for greater collaboration between patients, clinicians and the larger scientific community? And in these collaborations, who should lead and who should follow?

In this keynote co-presentation, Simon Denegri, OBE and Kristen Honey, PhD will take the stage to present perspectives on patient collaboration and co-production with researchers in medical research.

ABOUT THE JERRY MATCZAK EVERYONE INLUDED PLENARY SESSION

Eli Lilly & Co. lead consultant Jerry Matczak, understood the power of social media and had the openness to listen and meaningfully engage with the activist patients he found there. Jerry was an early supporter of Medicine X and our Everyone Included™ way of seeing the expertise all stakeholders bring to co-create solutions to health care problems. He described himself as a “respectful fan” of Medicine X and the ePatient movement.

Our goal in creating the Jerry Matczak Everyone Included™ Plenary Keynote Session in his name is to honor important discussions at Medicine X that raise awareness about Everyone Included™ and inclusive co-production in advancing research, education and clinical care closer to the shared vision of the Medicine X community.

Matczak passed away suddenly in 2017 at age 54. Friends and supporters of Jerry have organized a social action campaign, #belikejerry, to support patient and caregiver partnership in health care