Table 1. Service user/PPI contributions... | American Society of Hematology

Table 1.

Service user/PPI contributions and their impacts

Who was involved and how	Stage and contribution	Impact
	Application development
Nottingham Maternity Research Network (NMRN) members. Three in-person meetings, chief investigator, patient and public involvement (PPI) Lead	Discussion of: rationale for the study implications of anemia in pregnancy, what is important to women? intervention and possible alternatives experiences of anemia on quality of life experiences of the treatment of anemia and side effects experiences of follow-up of diagnosed anemia importance of respecting women’s autonomy and choice: over-the-counter (OTC) liquid iron preparations	Study supported: NMRN to provide ongoing advice Two NMRN members joined the research team and were named Service User Coinvestigators (SUCoIs). Informed: Trial design: no dietary advice arm Inclusion criteria Selection of outcome measures. Development of clinical decision guide Data item (use of OTC preparations)
	Planning, interpretation, and reporting of dose-finding study
NMRN meetings, chief investigator, PPI Lead SUCoIs Project management group (PMG) Written feedback	Collection of self-reported data Discussion of: acceptability of different methods avoiding burden for women environmental impacts	Informed: Plan for data collection
SUCoIs, PPI Lead Written feedback PMG	Feedback on participant-facing materials and protocol: participant information sheet (PIS) consent form medication adherence questionnaire (MARS-5)	Informed: PIS content MARS 5 included; reservations noted
SUCoIs Feedback on analytical report PMG Written feedback on draft	Interpretation of findings and relative emphasis of impacts on clinical measurements vs side effects Output Minutes	Incorporated
Trial Steering Committee (TSC)	Trial oversight	Independent public member of TSC Public contribution in all aspects of trial governance

Who was involved and how	Stage and contribution	Impact
	Application development
Nottingham Maternity Research Network (NMRN) members. Three in-person meetings, chief investigator, patient and public involvement (PPI) Lead	Discussion of: rationale for the study implications of anemia in pregnancy, what is important to women? intervention and possible alternatives experiences of anemia on quality of life experiences of the treatment of anemia and side effects experiences of follow-up of diagnosed anemia importance of respecting women’s autonomy and choice: over-the-counter (OTC) liquid iron preparations	Study supported: NMRN to provide ongoing advice Two NMRN members joined the research team and were named Service User Coinvestigators (SUCoIs). Informed: Trial design: no dietary advice arm Inclusion criteria Selection of outcome measures. Development of clinical decision guide Data item (use of OTC preparations)
	Planning, interpretation, and reporting of dose-finding study
NMRN meetings, chief investigator, PPI Lead SUCoIs Project management group (PMG) Written feedback	Collection of self-reported data Discussion of: acceptability of different methods avoiding burden for women environmental impacts	Informed: Plan for data collection
SUCoIs, PPI Lead Written feedback PMG	Feedback on participant-facing materials and protocol: participant information sheet (PIS) consent form medication adherence questionnaire (MARS-5)	Informed: PIS content MARS 5 included; reservations noted
SUCoIs Feedback on analytical report PMG Written feedback on draft	Interpretation of findings and relative emphasis of impacts on clinical measurements vs side effects Output Minutes	Incorporated
Trial Steering Committee (TSC)	Trial oversight	Independent public member of TSC Public contribution in all aspects of trial governance