Table 1:

Outline of partnership between patient partners and researchers in the research process

  • 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

Designing study
  • 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.)

Recruiting; analyzing and interpreting data
  • 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