Table 3 Patient and Family Co-I activities in each research phase

Design: interventions/tools/comparators

Edited and finalized project logo and acronym.

Suggested and designed an informational tool for the study that explains all of the different medical professionals patients may encounter when diagnosed with kidney disease.

Intervention Work Group members chose and designed our interventions, all patient and family Co-Investigators provide feedback and suggestions in the design of our interventions.

Choice of outcomes and measures

Provided feedback and created project outcomes that were most important to them (loss of control, acceptance, grief, mental status, quality of life, depression, anxiety and understanding kidney disease)

Helped design and refine our survey measure.

Participant recruitment

Reviewed recruitment materials and provided edits that were used in final recruitment materials (postcards, letters, fliers and telephone scripts)

Made suggestions for increasing the study enrollees’ participation in the National Kidney Foundation peer support program.

Edited new recruitment letters for education classes

Dissemination

Participated in our project website blog and social media to share information about our study: (http://www.kidneypreparenow.org), Facebook (https://www.facebook.com/KidneyPrepareNow/?fref=ts) and Twitter (https://twitter.com/Kidney_Prep_Now).

Suggested and designed a project brochure that patient and family member Co-Investigators can take to kidney disease meetings and PCORI annual meeting.

Presented as authors about the project at the American Society of Nephrology Kidney Week, American Association of Kidney Patients Annual Meeting, PCORI Annual Meeting and National Kidney Foundation Clinical Meeting. Co-author project journal article [16].