The Colloquium is a multi-disciplinary event exchanging ideas about how we best generate, summarize and communicate evidence to inform and change policy and practice worldwide.
The four keynote sessions will feature regional and international speakers addressing key issues in producing, applying and advocating for evidence. The sessions will highlight that everything Cochrane do is about, and for, patients and other health consumers.
Following each keynote talk, there will be a number of linked sessions that match the keynote theme. These sessions will continue discussions and the exchange of ideas.
Keynote 1. Challenge and change: issues for Cochrane in 2018
Sunday 16 September 2018, 9:00-10:30am
We are in times of change and challenge. At Cochrane’s core are two key things: patients and data. This Colloquium is unique in putting patient engagement at its heart and in being a “Patients Included” event. In this session we will look at some of the challenges for Cochrane provided by the world of big data and the realities of health care in the real world.
Mark Wilson is Cochrane's Chief Excecutive Officer (CEO). He works with the Cochrane Governing Board (formerly the Steering Group) in developing the organization’s strategic goals and objectives contained in Cochrane's Strategy to 2020. He is responsible for the effective running of Cochrane so that the organization achieves these goals and objectives, leading a Central Executive Team and our network of nearly 120 Cochrane Groups around the world.
Christine L. Borgman, Distinguished Professor and Presidential Chair in Information Studies at University of California, Los Angeles (UCLA), is the author of more than 250 publications in information studies, computer science, and communication. This includes 'Big Data, Little Data, No Data: Scholarship in the Networked World (2015)', from which she will draw material for her talk. She is a Fellow of the American Association for the Advancement of Science and of the Association for Computing Machinery. At UCLA, she directs the Center for Knowledge Infrastructures with funding from the Alfred P. Sloan Foundation and other sources.
Irene Pasquetto is a Ph.D. Candidate in the Department of Information Studies at UCLA, and a research assistant at the UCLA Center for Knowledge Infrastructures and also at the Participation Lab (PartLab) in the UCLA Institute for Society and Genetics. Her overarching research interest lies in the analysis of data-centric scientific practices and technologies, especially in relation to science policy-making. With her work, Irene aims at informing the design and implementation of governance models for data and code infrastructures.
Linked session: Beyond privacy: the emerging ethics of data reuse
Margaret McCartney is a GP in Glasgow, columnist for the BMJ, and broadcasts for Radio 4's Inside Health. She has written three books, The Patient Paradox, Living with Dying, and The State of Medicine. She has interests in evidence, risk, screening, professionalism and ethics.
Keynote title: Everyday annoyances: why is evidence in real life so hard?
Keynote chair: Martin Burton
Keynote 2. Working together: understanding and learning from patients' experiences
Monday 17 September 2018, 9:00-10:30am
Qualitative research gathers and analyzes people’s perspectives and experiences of health and care. In this session we argue that such research is crucial to inform the design and delivery of effective health services in all parts of the world.
Dr. Dalila Martínez is a Research Professor at the Universidad Peruana Cayetano Heredia in Lima, Peru. She is an Infectious Disease and Tropical Medicine specialist working in a public hospital and a Ph.D. candidate at the University of Antwerp, Belgium. Her experience as a multi-drug resistant tuberculosis patient has shaped her research focus incorporating the patient experience and quality of life measures into her pursuit to improve care and treatment adherence for infections that require long term care and produce discrimination, like tuberculosis and cutaneous leishmaniasis.
Dorothy is a PhD fellow at the KEMRI-Wellcome Trust Research Programme. She holds an Msc in Medical Anthropology. Her research interests and expertise are: qualitative research; health systems research and in Maternal Newborn and Child Health in LMICs. She is currently undertaking a qualitative study aimed at understanding the roles and experiences of mothers in caring for their hospitalised sick newborns in Nairobi City County.
Keynote title: Learning from mothers’ voices: lived experiences of mothers of premature babies in Kenya
Sue Ziebland (This presentation will now be delivered by Lisa Hinton, Deputy Director for Applied Research at the Health Experiences Research Group (HERG), on behalf of Sue).
Sue Ziebland is Professor of Medical Sociology and Director of the Health Experiences Research Group (HERG) in the Nuffield Department of Primary Care Health Sciences, University of Oxford. Sue’s background is in medical sociology, with increasing focus on qualitative research approaches. Sue has worked as a researcher in the academic, NHS and voluntary sectors and has published over 180 papers and chapters in social science and health publications. She was a founding member of the DIPEX (now Healthtalk) project in 1999. HERG specialise in qualitative methods of understanding health experiences and using that understanding for experience-based health information, clinical education and service improvements.
Keynote chair: Rae Lamb
Keynote 3. Working together: from theory to practice
Tuesday 18 September 2018, 9:00-10:30am
How, why and when do we partner with patients? In this session we will identify some of the challenges of working together. We will explore the value and impact these partnerships can have for individuals, communities and organisations.
Jennifer Johannesen’s son, Owen, had multiple severe disabilities all his life. He died in 2010 at the age of 12. Jennifer’s experiences as Owen’s caregiver and advocate led her to ask broader questions about disability and society, special education and clinical healthcare practice. Specifically: why do we do what we do, and whom does it serve? Jennifer now writes, lectures and consults on healthcare practice and policy related to patient-centred care, patient engagement, and critical thinking in clinical practice. Jennifer recently earned a Master of Science in Bioethics from Clarkson University (Schenectady NY), and is based in Toronto, Canada.
Keynote title: The trouble with patient and public involvement (PPI)
Mark currently works part time as Head of Impact for the Central Commissioning Facility of the National Institute for Health Research. Before that he has worked, amongst other places, for Oxford University Hospitals NHS Trust, the NHS Institute for Innovation and Improvement and Oxford University Innovation (the University's knowledge transfer arm). His work at the moment includes looking at ways to incorporate the patient experience into the evaluation of clinical and health research impact.
Mark is also part of the British Medical Journal's Patient Panel. He has been a trustee for the MS Society and briefly for Asthma UK and was diagnosed with relapsing remitting multiple sclerosis in 2004. He has just been made Parkrun's Ambassador to the MS community and is an Academic Visitor at the Radcliffe Department of Medicine in Oxford.
Keynote title: Research Impact Assessment - from practitioner to patient
Dr. Ruth Elwood Martin, Clinical Professor, University of British Columbia (UBC), Canada, worked as a family physician in correctional centres for 16 years. In 2000 she initiated a cervical cancer screening pilot inside prison, and later assisted with the HPV primary screening RCT in BC, ‘HPV-FOCAL’. In 2005, she introduced the unique concept of engaging women in prison, prison staff and academics in participatory health research (PHR), to address concerns raised by women themselves, and this work is published in peer-reviewed journals and the book, ‘Arresting Hope’.
Mo Korchinski started working as a University of British Columbia project assistant with Collaborating Centre for Prison Health and Education in 2006. She is currently the Project Manager for the project, “Unlocking the Gates Peer Health Mentoring Program.” Previously, Mo worked on the research project “Doing Time" and interviewed women about their health goals as they were being released from prison. Mo graduated from Nicola Valley Institute of Technology with a Bachelor of Social Work in 2014. Mo’s passion is working with women who are involved in the justice system as Mo has many years herself been incarcerated due to a long history with drug addiction.
Keynote chair: Rae Lamb