3:35pm - 4:40pm

Registration Information

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Putting Patients First 2019 Conference Panel: Ethical Considerations in Patient-Oriented Research

Panel: Lillian Hung, Jim Mann, Jennifer Johannesen, Holly Longstaff; Moderator: Stirling Bryan

Speaker Bios:


Lillian Hung is a clinical assistant professor at the UBC School of Nursing. Her research mainly focuses on examining how technology and environment impact the care experiences of persons with dementia. Her research is practice-based and patient-oriented. She is committed to facilitating connectivity between academia and practice, working collaboratively with interprofessional practitioners to find practical solutions to address pressing problems in care settings.
Twitter: @nurselillian

Jim Mann was diagnosed with Alzheimer's disease in 2007 and has since become an advocate and speaker in an effort to reduce stigma and shatter stereotypes around Alzheimer's and other dementias. He is an active community volunteer and advisor or co-investigator with various research projects. In line with Jim’s focus on ethics and the ethics board approval process, Jim is an Advisory Council member of Research Ethics BC and was honoured to be invited by the W. Maurice Young School of Applied Ethics, UBC, to be a Visiting-Community Scholar in July of this year.
Twitter: @JimMann83105425

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 health care practice. Specifically: why do we do what we do, and whom does it serve? Jennifer now writes, lectures and consults on health care 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.
Twitter: @jenjohannesen

Holly Longstaff is responsible for guiding the development, recommendation and implementation of innovative approaches to privacy policy and practice to build accountable information stewardship and privacy conscious practices that enable the execution of PHSA’s expanded mandate and the conduct of health research. She advises on the privacy requirements relating to new and expanded provincial initiatives working closely with PHSA’s Information, Access and Privacy, and Legal Services teams. She also provides leadership in developing and implementing governance mechanisms to enable nimble, multidisciplinary review of privacy and security requirements for new and expanded initiatives and research, including province-wide platforms and systems, digital and information technologies, and data access/sharing. Holly is a PhD level trained ethicist and research consultant. She serves as the ethicist on the BC Cancer Research Ethics Board and a US-based IRB. She has worked as a consultant for Health Canada, the Public Health Agency of Canada, and the CIHR Ethics Office and her work has been published in a variety of journals including CMAJ, Trends in Neurosciences and Cell Stem Cell.

Continue the conversation at a post-conference Tweetchat #PPF19 Tuesday, November 26 @ 12-1pm. Join the Unit’s Scientific Director, Stirling Bryan, in exploring questions from the conference panel session. Follow #PPF19.