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Table 1 Overview of methods under evaluation in this study

From: A comparison of three methods to generate a conceptual understanding of a disease based on the patients’ perspective

  CE Interviews Social Media Review GCM
Type of data collected Qualitative Qualitative Qualitative and quantitative
Design of data collection method Primary, prospective Secondary, retrospectivea Primary, prospective
Depth of data collected Deep, rich Varies depending on platform Shallow
Breadth of data collected Specific to study aims Broad Narrow
Ability to probe and explore new areas of interest High - interviewer interacts with subject, facilitates discussion and probes around key areas of interest Medium - dependent on existing data. If discussion not present in SM thread, cannot probe further Low – only pose one or two questions (or prompts) and responses are dependent on the quality of the prompt and the instructions to subjects
Availability of clinical/background data High – although depends on recruitment approach Low High – although depends on recruitment approach
Ability to confirm diagnosis High – although depends on recruitment approach Medium (typically self-confirmed diagnosis only) High – although depends on recruitment approach
Level of burden on subjects High Low Low
Level of burden on researcher High Low Medium
Time and cost burden High Low Low
Scientific acceptance/ best practice High Low Mixed (widely applied in other fields but less so for outcomes research)
Regulatory support High Mixed (depends on purpose of research) Mixed (broadly supportive of mixed methods approaches that utilize online technologies)
  1. CE concept elicitation, GCM group concept mapping
  2. aA social media review may also be performed prospectively but for the current study a retrospective approach was employed