Engagement and selection
- Plan and budget for patient/caregiver involvement as early as possible.
- Clearly define role (level of involvement, stage of research, specific responsibilities), required commitment (time, financial, emotional) and expected impact (directly on a specific project, on the wider kidney community agenda or expected benefits for future generations) with ‘terms of reference’ document.
- Allow time for reflection and questions.
- Consider the potential benefits for the consumers and clearly explain these. For example, developing new skills, greater understanding of disease, contributing to research for future generations.
- Involve a diverse group of consumers. For example, urban and rural, experienced and new, older and younger, well and unwell.
- Ensure projects have structure and broad participation. For example, enable remote involvement throughout online platforms and schedule meetings outside of business hours.
- Select consumers for whom your project is most relevant and whose expertise is best suited (e.g. target peritoneal dialysis patients for projects/interventions designed for peritoneal dialysis patients).
- Work with consumers to effectively disseminate opportunities and disseminate in preferred avenues. For example, phone/letter for older consumers, social media for younger consumers, in clinic/centre for haemodialysis patients).
- Promote opportunities in clinics (e.g. videos, pamphlets, posters).
- Work with health professionals to engage patients/caregivers.
- Work with consumers to involve new consumers. Buddy experienced consumers with ‘new’ consumers.
Training, support and education
- Provide education for consumers. For example, current research activities, kidney disease, skills and programs (study design, academic writing, critical appraisal, recruitment).
- Consider psychological, mental and physical demands of involvement:
- Ensure environment is accessible and can accommodate for patient needs (e.g. place to do peritoneal dialysis, elevator access);
- Use communication strategies and simple language to reduce cognitive burden of involvement on patients;
- Have referrals available in case of distress (e.g. social worker);
- Offer flexible meeting options (e.g. videoconferencing, regular breaks, time for questions);
- Where possible, embed opportunities into routine care (e.g. transplant clinics)
- Financial reimbursement or support may assist consumers to become involved. For example, the financial burden/sacrifice of involvement on consumers, and the costs incurred (travel expenses, time off work).
Empowering the patient voice
- Appoint more than one patient representative on a steering committee/working group.
- Consider forming a diverse patient advisory group to oversee research activities.
- Produce introduction packets with relevant materials (e.g. glossary of terms/acronyms, background reading, helpful resources, videos).
- Ensure plain language and explain technical/medical terminology when necessary.
- Allow time before or after meetings for consumers to prepare and debreif. For example, send meeting agenda with topics to be discussed, follow-up post-meeting.
- Involve across all stages of the research. This can be easily enable by involvement early on, before the grant stage.
- Partner consumers with experienced research ‘buddy’ whom they can reach out to with any problems, questions or suggestions.
Connection and community
- Build a strong and diverse consumer group.
- Consider developing a patient platform with plain language summaries of research, opportunities to become involved in research and connect with others.
- Keep communications open with regular updates via newsletters, e-mails, texts and/or social media, even if no formal results are available.
- Collaborate with patient/caregiver and community organizations (e.g. present at patient support groups) to raise awareness of kidney disease, encourage knowledge exchange and advertise opportunities for involvement.
- Work with other organisations to streamline resources and materials and opportunities.
- Disseminate research findings in plain language and informal settings to consumers.
- Build trust and encourage future involvement.
This lesson has been adapted from Principles and strategies for involving patients in research in chronic kidney disease: report from national workshops, Gutman et al. 2019. This study involved workshops with patients/caregivers and clinicians/researcher discussing principles and strategies for effective patient involvement in chronic kidney disease research. Access here.