Across the world COVID-19 has had an unprecedented impact on both our private lives and our working lives. Governments and major funders of health and social care research have swung into action, pausing and postponing some research and policy activity, and changing well established processes and procedures as they prioritise responding to COVID-19 as quickly as possible.
We must not lose sight of the importance of including patients and the public in these discussions and the development of solutions. For example, the public can help ensure that the studies and policy responses are ones that people want to be involved in, that the concerns of public are reflected in research and that all the information about the research and its outcomes are understood by the public. Working together – researchers, scientists, policy people, patients and public – will result in more relevant research, higher quality research and better outcomes.
In these videos, originally part of the Cochrane Learning Live and International PPI Network series, the presenters provided a forum to discuss, debate and share information on how and to what extent the public and patients are engaged and involved in discussions and research related to COVID-19. The intention is to use discussion from the webinar to inform an opinion article about patient and public involvement and engagement and COVID-19.
The webinar was delivered in June 2020 and below you will find the videos from the webinar, together with accompanying slides to download [PDF].
Part 1: COVID-19 Core Outcomes Set Project
Part 2: Responding to COVID19 - an Australian perspective
Part 3: Engagement in the time of COVID-19: Experiences from Vietnam
You can also access the recording from the first webinar here.
Professor Allison Tong is a Principal Research Fellow with a Robinson Fellowship at the Sydney School of Public Health, The University of Sydney. She held an Australian National Health and Medical Research Council (NHMRC) Career Development Fellowship to 2019. She is a social scientist with experience in patient-centred outcomes research in chronic disease, particularly chronic kidney disease. Allison has an interest in patient involvement in research, including in the context of research priority setting, the development of core outcomes for research, and in the co-production of clinical trials.
Anne McKenzie is the Senior Manager for Community Engagement at the Telethon Kids Institute in Perth, Western Australia. Anne has held professional and voluntary roles as a consumer advocate for over twenty-five years. Since 2004 Anne has worked in research organisations to increase the community voice in research. In this role she developed organisation wide strategies for implementing consumer and community involvement, resources and training for consumers, researchers and clinicians. In 2015 Anne was appointed to the Order of Australia for her work in health service and research.
Dr Mary Chambers is the Head of Public and Community Engagement at the Oxford University Clinical Research Unit Vietnam, which is part of the Wellcome Trust Africa Asia Programme. Mary has been in Vietnam for over 20 years – initially as a medical entomologist, working on malaria and dengue transmission. Over the past decade, she has developed the public and community engagement programmes for OUCRU units in Ho Chi Minh City and Hanoi Vietnam, Nepal and Indonesia. The PE team has over 20 members who work on a diverse range of engagement projects with a range of communities including schoolchildren, farmers or patients in clinical research trials. They also place a strong emphasis on strengthening capacity of researchers and health-care workers to engage with their communities. Mary’s personal interests lie in using participatory art and film to amplify community voices and bring them into conversations about biomedical research.
Dr Gary Hickey is a Senior Public Involvement Manager at the Wessex Institute, and the Patient and Public Involvement Strategic Lead for the Research Design Service South East. His key interests are co-production and international patient and public involvement in research.
Richard Morley is Cochrane's Consumer Engagement Officer and, with colleagues, has established the COVID-19 consumer rapid response group to ensure patient and carer views are heard in rapid reviews.