Frequently Asked Questions

The videos below feature some of our consumers, researchers and physicians addressing some of the most frequently asked questions about how consumers can be involved in research. There’s definitely no research experience required.

Why should I be a consumer representative? What’s in it for me?

This video covers reasons why consumers become involved with AKTN:

  • to ensure that research is relevant, meaningful and important to patients
  • understand kidney disease better and what research is being done
  • build relationships with researchers, other patients, caregivers and families

What type of tasks do the consumers do at AKTN?

This video covers what types of tasks consumers do:

  • tasks depend on your own interests, skills and time available
  • may involve trial planning workshops or attending committee meetings
  • may involve helping recruit participants or reviewing study information given to them

Are any specific skills or knowledge needed?

This video discusses whether consumers need certain skills or knowledge to become involved:

  • most valuable knowledge is a consumer’s own direct, lived experience of kidney disease
  • a willingness to share your own experience with the research team
  • your own unique skills from everyday life (e.g. work experience, use of social media)

Who will show me how?

This video discusses who will show you how to help AKTN as a consumer:

  • all AKTN staff members are willing and able to help and answer questions
  • information and education is provided
  • learn from each other / buddies / mentors

What is the type of time commitment/input required from consumers?

This video covers what kind of time commitment and input is required:

  • entirely up to you, flexible to allow for other commitments
  • may involve time spent in meetings or workshops, emailing or reviewing documents
  • possibly just a few hours a year

Who can and can’t be involved in consumer activities?

This video covers who can and can’t be involved as consumers:

  • AKTN is very inclusive and would like many people with different backgrounds involved
  • sharing the load of trial involvement is extremely important
  • can be involved with a trial even if it doesn’t reflect exactly what you’ve experienced

Can I be a Consumer Advisory Board member while being a participant in AKTN trials?

This video discusses whether you can be a Consumer Advisory Board member and a trial participant:

  • not recommended, as it can affect how you participate in a trial
  • it’s fine to participate in a trial if you’re on the Consumer Advisory Board of a different trial

Why did you choose to be involved in consumer activities?

This video has consumers telling us why they’ve chosen to get involved:

  • had felt isolated but have now met lots of people
  • to share struggles experienced as a caregiver in a positive way
  • it’s fascinating, exciting, and a chance to give back after receiving care