Consumer involvement at conferences helps to emphasis the experiences and needs of the consumer. Consumers can play a role in prioritising the research agenda with consumers actively involved in the pursuit of better outcomes in kidney health. It allows consumers to work alongside researchers with similar interests. Involving consumers as organisers, facilitators and presenters at scientific conferences also provides an opportunity for other stakeholders (e.g. clinicians and researchers) to hear patients’ experiences and priorities.
Tips to involve consumers:
- Provide early support to help them feel comfortable and familiar with conference proceedings
- Offer registration assistance.
- Consider policy and options for financial support for consumer speakers/presenters’ attendance at and transport/accommodation to conference (i.e. if conference is interstate).
- Provide clear objectives of the day or specific session(s) consumers will be a part of.
- Provide opportunities to practice and time presentations and provide feedback.
- Provide a ‘buddy’ at the conference. Either a researcher or consumer. Someone they can comfortably ask questions.
- If you are involving consumers in presentations, be specific what what will be presented. What is the focus of the presentation and what are the learning points for the audience.
- Breakdown any power imbalances. Remove titles.
Organising conferences:
- Involve consumers in determining session aim(s) and topic(s), detailed agendas
- Background information and biographies to be adequately prepared to help chair sessions and be on panels. Include this information in running sheets/scripts for consumer co-facilitators of sessions.
- Consider opportunities to host consumer-specific session(s) alongside main scientific meetings outside of business hours or on weekends, to maximise consumer attendance (i.e. accommodating patients’ work, family and treatment commitments)
- Consider options and funding support available to include live-streaming option and recording of consumer-specific session(s), to enable remote participation for those unable to travel to attend conferences in-person. Recordings of session(s) should be hosted on publicly available patient organisation websites for viewing at other times. Offering live streaming events is important as it is unrealistic to expect good consumer attendance if only offering in-person options. Patients likes researchers and clinicians have work, family and treatment commitments and can not afford to take time off from their everyday busy lives, as well as being unlikely to afford the cost of flying interstate or overseas, finding accommodation, and conferences fee.
- Consider promoting consumer-specific sessions to local and interstate renal and dialysis units, to encourage them to host viewings of live-streaming of event(s) with local patients and families.
- Consumer specific sessions provide an opportunity to for consumers and their families to interact with research, education, information, and support. Promote event widely and invite all stakeholders to attend these sessions as audience members (i.e. providing opportunity for not only other consumers, but health professionals, researchers, and policy makers to hear perspectives and priorities of patients and families)
- Conference may be an unfamiliar environment for many so having ‘buddies’ is a great way to ease the nerves, help make consumers feel welcome and maximises the opportunity. Provide buddy’s contact information to consumers before the event, specify a designated ‘meeting point’ at conference venue if people require assistance or help,
- At consumer-specific sessions, include opportunity for feedback and evaluation of facilitators’/speaker’s and audiences’ experience – provide online and paper-based version of feedback surveys to collate information on number and location of attendees, and views on session content and presentation.