Pre-conference: Co-designed workshop on best practices for public involvement in health research and healthcare governance Passed
Tuesday May 14, 2024 09:00 - 12:00 J2
Workshop facilitators: Eskil Degsell, Jana Bergholtz, Jeanette Tenggren Durkan, Maragaret Joy Milne, Margareta Haag, Maria J. Santana, Sandra Zelinsky, Sara Riggare
Track: Workshops
It doesn't matter, if you are new to public involvement or if you are already an expert. Everyone is welcome!
In this workshop, we want to focus on learning from each other through engaging discussions.
Specifically, you will be able to choose from the following topics:
1) Patient and public involvement for beginners (SAMKA recommendations: https://www.samka.se/material)
2) How to facilitate patient advisory councils?
3) Informal caregivers' perspective(s): Why are they missed? What are the barriers?
4) Communication/negotiation between researchers and patient/carer-representatives
5) Involving people with lived experience in healthcare research: Why? & What are best practices?
6) Guidance for public involvement from various countries (Are you already an expert in PPI? Help us expand a resource library we have started! Please bring a laptop!)
7) Any other potentially emerging topic.
Register for the workshop via: trippus.net/WorkshopsGCPCC
Seminar type
On site only
Lecture type
Workshop
Conference
GCPCC
Lecturers
Eskil Degsell Workshop facilitator
Jana Bergholtz Workshop facilitator
Patient Co-Researcher
GPCC, University of Gothenburg
Jeanette Tenggren Durkan Workshop facilitator
GPCC
Maragaret Joy Milne Workshop facilitator
Honorary Lecturer
Advocate for Parkinson's Disease
Negotiation in Person Patient Involvement - asking the questions that make
Shared Purpose, Respect, Roles and Responsibilities, Capacity and capability for engagement, Transparency in Communication and documentation, Continuity between researchers and PPI
Margareta Haag Workshop facilitator
Chair Swedish Network against Cancer - Nätverket mot cancer
GPCC Person Council
Chair of the Board of the Swedish Network against Cancer
Member of GPCC Person Council
Member of Steering Board All.Can Sweden, Vision Zero Cancer/Testbed Sweden Precision Health Cancer, EUPATI Sweden, Genomic Medicine Sweden (GMS)
Board member of Research Sweden Member Society
Member of Vinnova Project Samka! - Patient and next-of-kin co-creation for better research and health care
Senior Advisor Swedish Association of Chronic Oedema
Founding member of Lipedema World Alliance
Maria J. Santana Workshop facilitator
Cumming School of Medicine, University of Calgary
Dr. Maria J. Santana is a health services researcher, patient and family-centred care scientist, Professor in the departments of Pediatrics and Community Health Sciences at the Cumming School of Medicine, University of Calgary, Canada.
Dr. Santana has received training in clinical pharmacy (BPharm, MPharm, London School of Pharmacy, UK, Universidad La Laguna, Spain), public health and clinical epidemiology (PhD, University of Alberta, Canada).
She is the provincial director, Patient Engagement for the Alberta Strategy for Patient-oriented Research (https://absporu.ca/patient-engagement-2/ ). She is the principal investigator for the Person-centred Care Research Team, https://cumming.ucalgary.ca/research/person-centred-care and the academic director of the Patient and Community Engagement in Research, PaCER, https://www.ucalgary.ca/patient-community-engagement-research .
In 2023, she received the President Award by the International Society for Quality of Life Research. Recently, she has collaborated in three major international initiatives: World Health Organization - Patient Engagement: Technical Series on Safer Primary Care; Pan-American Health Organization – World Hypertension League Hypertension Monitoring and Evaluation Framework to aid Hypertension Control Programs; and the International Consortium for Health Outcome Measurement Adult Diabetes. She is a scientific advisor for the Gothenburg Person-centred Centre, University of Gothenburg, Sweden.
Sandra Zelinsky Workshop facilitator
Patient Engagement Researcher
University of Calgary
Sandra is a graduate of the Patient and Community Engagement Research (PaCER) program from the University of Calgary, and she is a trained Digital Storytelling facilitator from The Story Center, USA. She believes in the importance of bringing the lived experience expertise to health research teams and has seen the direct impact on the conduct and outputs of research. She helps to support research teams in working together in patient engagement and patient-oriented research for the AbSPORU Patient Engagement Team and IMAGINE SPOR Chronic Disease Network. She also conducts qualitative patient-led research with an interest in arts-based approaches, specifically Digital Storytelling. It is her lived experiences as a person living with Crohn’s disease and as a breast cancer survivor that motivates her to work collaboratively in health research.
Sara Riggare Workshop facilitator
PhD & Patient researcher, Uppsala University, Participatory eHealth and Health Data Research Group, Sweden