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      Eliciting patient-important outcomes through group brainstorming: when is saturation reached?

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          Abstract

          Purpose

          Group brainstorming is a technique for the elicitation of patient input that has many potential uses, however no data demonstrate concept saturation. In this study we explore concept saturation in group brainstorming performed in a single session as compared to two or three sessions.

          Methods

          Fifty-two predominately African American adults patients with moderately to poorly controlled Diabetes Mellitus participated in three separate group brainstorming sessions as part of a PCORI-funded group concept mapping study examining comparing methods for the elicitation of patient important outcomes (PIOs). Brainstorming was unstructured, in response to a prompt designed to elicit PIOs in diabetes care. We combined similar brainstormed responses from all three sessions into a ‘master list’ of unique PIOs, and then compared the proportion obtained at each individual session, as well as those obtained in combinations of 2 sessions, to the master list.

          Results

          Twenty-four participants generated 85 responses in session A, 14 participants generated 63 in session B, and 14 participants generated 47 in session C. Compared to the master list, the individual sessions contributed 87%, 76%, and 63% of PIOs. Session B added 3 unique PIOs not present in session A, and session C added 2 PIOs not present in either A or B. No single session achieved >90% saturation of the master list, but all 3 combinations of 2 sessions achieved > 90%.

          Conclusions

          Single sessions elicited only 63-87% of the patient-important outcomes obtained across all three sessions, however all combinations of two sessions elicited over 90% of the master list, suggesting that 2 sessions are sufficient for concept saturation.

          Trial registration

          NCT02792777. Registered 2 June 2016.

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          Most cited references7

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          Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research.

          In the patient-reported outcomes (PROs) field, strict regulatory requirements must be met for qualitative research that contributes to labeling claims for medicinal products. These requirements not only emphasize the importance of reaching saturation but also of providing documentary evidence that saturation has been reached. This paper reviews qualitative literature for useful definitions of the concept and for practical approaches for assessing saturation. The paper considers approaches in light of the rigorous regulatory requirements for PRO research that are used to support labeling claims for medicinal products and the wider requirements for flexibility and creativity in qualitative research in general. This assessment is facilitated by the use of examples from our past qualitative PRO studies. Based on conclusions from this assessment, we offer preliminary recommendations for future qualitative PRO studies for assessing and documenting saturation.
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            Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material.

            The importance of consumer involvement in health care is widely recognised. Consumers can be involved in developing healthcare policy and research, clinical practice guidelines and patient information material, through consultations to elicit their views or through collaborative processes. Consultations can be single events, or repeated events, large or small scale. They can involve individuals or groups of consumers to allow debate; the groups may be convened especially for the consultation or be established consumer organisations. They can be organised in different forums and through different media. We anticipated finding few comparative evaluations that reliably evaluated the effects of consumer involvement. To assess the effects of consumer involvement and compare different methods of involvement in developing healthcare policy and research, clinical practice guidelines, and patient information material. We searched: the Cochrane Consumers and Communication Review Group's Specialised Register (4 May 2006); the Cochrane Controlled Trials Register (CENTRAL) (The Cochrane Library, Issue 1 2006), MEDLINE (1966 to January Week 2 2006); EMBASE (1980 to Week 03 2006); CINAHL (1982 to December Week 2 2005), PsycINFO (1806 to January Week 3 2006); Sociological Abstracts (1952 to 24 January 2006); and SIGLE (System for Information on Grey Literature in Europe) (1980 to 2003/1). We scanned reference lists from relevant articles and contacted authors. Randomised and quasi-randomised trials, interrupted time series analyses, and controlled before-after studies assessing methods for involving consumers in developing healthcare policy and research, clinical practice guidelines or patient information material. The outcome measures were: participation or response rates of consumers; consumer views elicited; consumer influence on decisions, healthcare outcomes or resource utilisation; consumers' or professionals' satisfaction with the involvement process or resulting products; impact on the participating consumers; costs. Two review authors independently selected trials for inclusion, assessed their quality and extracted data. We contacted study authors for clarification and to seek missing data. We presented results in a narrative summary and pooled data as appropriate. Five randomised controlled trials of moderate or low methodological quality involving 1031 participants were included. There is moderate quality evidence that involving consumers in the development of patient information material results in material that is more relevant, readable and understandable to patients, without affecting their anxiety. This 'consumer-informed' material can also improve patients' knowledge. There is low quality evidence that using consumer interviewers instead of staff interviewers in satisfaction surveys can have a small influence on the survey results. There is very low quality evidence of telephone discussions and face-to-face group meetings engaging consumers better than mailed surveys in order to set priorities for community health goals, and resulting in different priorities being set for these goals. There is little evidence from comparative studies of the effects of consumer involvement in healthcare decisions at the population level. The studies included in this review demonstrate that randomised controlled trials are feasible for providing evidence about the effects of consulting consumers to inform these decisions.
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              The use of concept mapping in measurement development and evaluation: Application and future directions

                Author and article information

                Contributors
                215-955-8234 , Marianna.lanoue@jefferson.edu
                Alexzandra.gentsch@jefferson.edu
                Amy.cunningham@jefferson.edu
                Geoffrey.mills@jefferson.edu
                Amanda.doty@jefferson.edu
                Judd.Hollander@jefferson.edu
                Brendan.carr@jefferson.edu
                larry@loebell.com
                gweing333@comcast.net
                Kristin.rising@jefferson.edu
                Journal
                J Patient Rep Outcomes
                J Patient Rep Outcomes
                Journal of Patient-Reported Outcomes
                Springer International Publishing (Cham )
                2509-8020
                4 February 2019
                4 February 2019
                December 2019
                : 3
                : 9
                Affiliations
                [1 ]ISNI 0000 0001 2166 5843, GRID grid.265008.9, College of Population Health and Department of Family and Community Medicine, , Thomas Jefferson University, ; 1015 Walnut St., suite 401, Philadelphia, PA 19107 USA
                [2 ]ISNI 0000 0001 2166 5843, GRID grid.265008.9, Department of Emergency Medicine, , Thomas Jefferson University, ; Philadelphia, USA
                [3 ]ISNI 0000 0001 2166 5843, GRID grid.265008.9, Department of Family and Community Medicine, , Thomas Jefferson University, ; Philadelphia, USA
                [4 ]Voicing Outcomes Important for Care (VOICe) Study, Patient and Key Stakeholder Advisory Board (PAKSAB) member, Philadelphia, PA USA
                Author information
                http://orcid.org/0000-0001-7823-9693
                Article
                97
                10.1186/s41687-019-0097-2
                6360192
                30714080
                d3dbc29a-dbaa-4d01-bde0-34f61e43c0b4
                © The Author(s) 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                History
                : 18 September 2018
                : 15 January 2019
                Categories
                Short Report
                Custom metadata
                © The Author(s) 2019

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