Table 5.

Changes in research design and management made in response to the Steering Committee

No.	Topic	Patient comments	Status A: response completed B: in progress C: under consideration D: unchangeable
1	Study benefit	The benefits of participation in research are unclear.	A
2	Study purpose	The purpose of the study is unclear.	A
3	Research progress	The progress of the research should be disseminated.	A
4	Patient needs	An opportunity to connect with other patients and doctors and better understand diseases is important for patients.	A
6	Registration process	The registration pathway is time-consuming.	C
		Return envelope for sending the consent form should be attached when participants are requested to mail a consent sheet.	A
		Explanation of the consent sheet format is unclear.	A
7	Participant reminders	The provisional registration reminder should be sent earlier.	A
		People who have not responded to the questionnaire should be reminded.	C
8	Wording difficulties	The expressions used in the questionnaires are difficult to understand.	D
9	Volume and description of questionnaires	The amount covered in questionnaires is too burdensome.	D
		The required range of responses to the question is unclear.	B
		The approximate time to complete each questionnaire should be noted.	B
10	Meeting names	The name of the meeting should be changed to suit the purpose.	A
11	Social media	Images and links should be added to the article.	A
		Information on symptoms and other studies will increase the value of the article.	C

The table shows the changes to the study management / design suggested by patients in the initial nine meetings (November 2017 – February 2019). The comments can be divided into 11 categories. Each letter indicates the comment status; A: response completed, B: in progress, C: under consideration, D: unchangeable. Of the 16 comments, 11 have already been implemented or are currently in progress