Important principles and values noted by the Alberta SPOR (Strategy for Patient Oriented Research) unit and PCORI (Patient Centred Outcomes Research Institute) for managing consumer relationships are inclusiveness, support, mutual respect, trust, transparency, honesty, valuing reciprocal relationships, co-learning, and partnerships. These organisations highlight that active engagement of consumers is key to achieving meaningful engagement.
Below you will find key points to engaging consumers produced in guidelines by the Alberta SPOR unit document, ‘Patient Engagement in Health Research A How-to Guide for Researchers’:
- Start with pre-engagement, and taking time to build trust
- Have a single point of contact for consumers
- Establish clear processes and communicate often
- Provide constructive feedback to affirm that consumers are contributing to the project
- Encourage consumers to share their opinions and provide adequate time for them to engage
- Consider providing resources in consumer and community involvement for consumers, researchers and clinicians. This can facilitate meaningful engagement and collaboration; remember to budget for training if it's required
- Use accessible language
- Eliminate hierarchy and status
- Include differing consumer perspectives throughout the project.
In the video below, Dr Virginia Vandall-Walker (Associate Professor, Faculty of Health Disciplines, Athabasca University Canada) discusses meaningful engagement between consumers and researchers.
One of the key core concepts, if not the core concept of engaging consumers, is meaningful engagement,
Alberta SPOR Support Unit (2018), Patient Engagement in Health Research: A How-to Guide for Researchers
The Canadian Foundation for Healthcare Improvement has established a Patient Engagement Resource Hub for accessing resources.