As coinvestigators on a multidisciplinary team funded by the Canadian Institutes of Health Research,27 the patient partners (C.L.K., K.E. and A.S.) were allocated funds and approached researchers with their research idea

Researchers and patient partners met to discuss the purpose of the survey and to agree on a preliminary timeline and allocation of tasks and responsibilities

Research trainees (N.M. and C.B.H.) and lead patient partner (C.L.K.) codeveloped the initial questionnaire

Patient partners suggested questions based on his/her personal experiences and interactions with people about this type of research

Researchers modified some questions based on their expertise in designing surveys and analyzing health data

Patient partners provided iterative feedback to ensure the survey could be completed within 15 min and the content would be understandable and interesting to lay audiences

Patient partners recommended adding a progress bar (A.S.) and emphasizing that the physician billings data do not contain comments from patients’ charts (K.E.)

Patient partners advertised the survey through their personal Twitter feeds and their organizations’ websites, email lists and social media channels

K.E. interviewed the first author for her organization’s newsletter26 to promote the survey and inform readers about this type of health research

Researchers promoted the survey to their colleagues at health research institutes and patient organizations throughout Canada

C.B.H. conducted the statistical analysis and presented the results to the team at in-person meetings

Patient partners reviewed and affirmed the results and discussed their possible impact for policy-makers, researchers and the public

Research trainees drafted the abstract and manuscript, which the principal investigator (L.C.L.) and patient partners reviewed and edited for critically important content

Researchers and patient partners copresented a poster of the study findings at a major scientific meeting,28 where it was selected for a poster tour

Patient partners along with researchers produced a lay summary of study findings

Patient partners and researchers are codeveloping materials to educate the public, based on the learning needs and interests identified from the survey

Patient partners and researchers may undertake further studies to assess people’s preferences about the terminology to use