POINTERS: Patient OrIeNTEd Research Webinar Series
As part of our Training and Capacity Development activities, the BC SUPPORT Unit is pleased to offer webinars, free of charge, along with their recordings, to help stakeholders learn more about the BC SUPPORT Unit, patient-oriented research methods and success stories, and to learn about updates from the Unit.
View the POINTERS webinar archive below.
Interdisciplinary Collaboration with Patient Partners - Sarah Crowe
Presenter: Sarah Crowe
Advancements in technology and care have created a growing population of persons living with chronic critical illness. Chronic critical illness includes persons living with long term mechanical ventilation. Within Fraser Health there is a group of chronically critically ill long term ventilated patients who reside in residential care and are faced with a variety of stresses. The aim of our study is to better understand the resident, family and staffs’ healthcare expectations and sources of distress. In order to ensure our research is meaningful and practical our team was expanded to include patient partners. The goal of this presentation is to share our experience of collaboration as a research team, from early recruitment and integration of our patient partners to our ongoing collaboration and analysis of data.
Exploring Home Tube Feed Use & Experiences - Rebekah Sandhu
Presenter: Rebekah Sandhu
Part 1: Introduction & Background
Part 2: Research Journey & Patient-Oriented Research
Part 3: Patient-Oriented Research Continued & Research Reflections
The PREFeR (PRioritiEs For Research) project - Ruth Lavergne and Brenda Jagroop
Identifying patient priorities for primary care research in British Columbia
Presenters: Ruth Lavergne and Brenda Jagroop
Patients need to be part of the very early stages of research when ideas are identified and prioritized, but this doesn’t often happen. The PREFeR project team includes members of the BC-Primary Care Research Network Patient Advisory along with researcher partners. Together the project team took a structured approach to identify topics for future primary care research from the patient perspective, as well as explore how patient and primary care provider ratings of the importance of these topics compared.
This webinar describes the process the project team used to identify topics, survey broader groups of patients as well as providers, and collaboratively interpret results. Presenters will discuss the topics identified and how these can inform future research questions.
Improving health outcomes for persons in long-term care facilities in northern British Columbia - Rebecca Ferris
Presenter: Rebecca Ferris
Development of an intervention study aimed to improve quality of life by enhancing accessibility to the natural environment and horticulture therapy.
In long-term care facilities (LTCF), loneliness is a growing problem that has reached epidemic proportions. Although residents in LTCFs may be surrounded by many people, they can feel lonelier than they have ever felt in their life. Transitions can be a particularly difficult experience as people often lose connections from their community and can find it difficult to build new relationships with people who may not share the same interests or level of cognitive wellbeing. To address the need to better support LTCF residents to remain socially connected and to actively engaged in life, we brought together a team involving residents at Gateway Lodge, a LTCF and Assisted Living Facility in Prince George, leaders from the Northern Health Authority, and researchers from UNBC to co-develop a response. Our resident partners identified gardening and horticulture activities as a very meaningful activity that they valued as an important part of quality of life yet was not available in an accessible way to them in the LTCF. Therefore, the goal of our activities was to collaborate with residents, care staff, and management of the facility to identify priorities and co-design further steps to enhance opportunities for gardening and horticulture. Our overarching goal is to increase opportunities for meaningful engagement and to reduce incidence of social isolation and loneliness in the LTCF.
This presentation describes the process to co-develop a project to incorporate gardening activities into daily life in the LTCF. It highlights the importance of taking a person-centered approach to engaging residents to identify the challenge and be part of the solution to address feelings of loneliness.
It shares the important learnings during our collaborative research design process and discusses current activities focused on hydroponic and raised bed gardening and horticulture education as the team currently pilots a co-designed program to support residents to grow and consume their own vegetables and herbs in the LTCF.
Reducing the Stigma of Substance Use & Building Capacity in Patient Oriented Primary Care Research - Paige Phillips, Bernie Pauly and Karen Urbanoski
Presenters: Paige Phillips, Bernie Pauly and Karen Urbanoski
This webinar highlights a project to address stigma in primary care settings toward people who use drugs.
The Stigma and Primary Care research team includes academic researchers and community researchers (people who use or used substances), and partners from the Victoria Division of Family Practice and Island Health. Their aim was to develop a model of culturally safe primary care for people who use substances. Care that is “culturally safe” recognizes the historical, political, social, and economic contexts that shape people’s health and their experiences with health care providers. Criminalization, discrimination, poverty, stigma and other factors are commonly experienced by people who use substances, and create conditions that lead many to avoid or delay seeking medical care unless it is a crisis.
With funding from CIHR’s Strategy for Patient-Oriented Research, the team collected data and used concept mapping to develop their model of culturally safe primary care. The model describes practices and principles that, if enacted, would make people feel safe to seek out primary care. With additional funding from the MSFHR, the team is creating a video and workshop for primary care providers based on study findings.
Giving Patients and Health Care Providers a Voice in Pediatric Biobanking - Suzanne Vercauteren
Presenter: Suzanne Vercauteren
Dr. Suzanne Vercauteren brought together members of the public age 10 years and older, pediatric patients and their families as well as healthcare providers and researchers to determine their opinions, expectations and concerns about pediatric biobanking.
A CIHR/SPOR grant was secured to hold workshops with stakeholders involved in biobanking including the public (three separate groups: parents, adolescents 14-18 years and children 11-13 yrs), patients (three separate groups: parents, adolescents 14-18 years and children 11-13 yrs) and healthcare providers and researchers. We asked questions about participating in research and more specifically biobanking including the importance of research, facilitators and barriers of biobank participation, engagement methods etc. Results from these workshops highlighted the importance of research and biobanks including pediatric biobanks, but education and engagement as well as creating a research culture are important factors to allow optimal trust and participation of all stakeholders.
Understanding the Mental Health & Recovery Needs of Canadian Youth with Mental Illness - Skye Barbic
Presenter: Skye Barbic
A CIHR SPOR collaboration grant was secured for this research project. Through the collective engagement of youth, researchers, knowledge users, clinical partners, clinician scientists, and trainees, this project addresses a national priority to improve health outcomes for youth and enhance the overall health care experience of youth.
This meeting will be held via Cisco WebEx (webconferencing). To fully participate, you will need:
- a computer (preferred) or smart phone or tablet
- an internet connection
Failing that, you can still participate via teleconference using the numbers below.
Health Data Platform
Part of a Data Plan, the Ministry of Health and BC SUPPORT Unit are collaborating on the development of the Health Data Platform Initiative to enable data sharing within the BC health sector that is built on leading privacy and security practices. This webinar will be of interest to academic and clinical researchers, health system policy and decision makers, and patients. Don’t miss the opportunity to learn more about the Health Data Platform initiative and how it will help transform access to data and enable better data analysis, positioning BC for greater excellence in health research that will ultimately make a difference in the health of British Columbians and the sustainability of our health care system. Shirley Wong is the Executive Project Manager, Strategic Data Initiatives at the Ministry of Health. In this role, she is leading the development of the Health Data Platform Initiative. She has over 20 years of experience in data-related IM strategy and governance in the public sector.
Child sized KT - Shazhan Amed MD FRCPC MSc.PH
Presenter: Shazhan Amed MD FRCPC MSc.PH Clinical Associate Professor - Department of Pediatrics, UBC Endocrinologist - BC Children’s Hospital
This presentation describes a vision for a robust interactive KT platform that will catalyze the engagement of children and their parents, as well as health care practitioners and other key stakeholders in child health research. Results from a consultation with over 400 parents and 60+ healthcare providers, researchers, administrators and leaders will be shared.
For more information about the platform, please click here.