Cargando…

Study of Methods for Assessing Research Topic Elicitation and pRioritization (SMARTER): Study Protocol to Compare Qualitative Research Methods and Advance Patient Engagement in Research

BACKGROUND: Involving patients as partners in research is a defining characteristic of patient-centered outcomes research (PCOR). While patients’ experiential knowledge of a health condition or treatment may yield research priorities not reflected by researchers and policy makers, the methods for id...

Descripción completa

Detalles Bibliográficos
Autores principales: Lavallee, Danielle C, Comstock, Bryan, Scott, Mary R, Avins, Andrew L, Nerenz, David R, Edwards, Todd C, Patrick, Donald L, Lawrence, Sarah O, Bauer, Zoya, Truitt, Anjali R, Jarvik, Jeffrey G
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5608987/
https://www.ncbi.nlm.nih.gov/pubmed/28882810
http://dx.doi.org/10.2196/resprot.7565
_version_ 1783265526821158912
author Lavallee, Danielle C
Comstock, Bryan
Scott, Mary R
Avins, Andrew L
Nerenz, David R
Edwards, Todd C
Patrick, Donald L
Lawrence, Sarah O
Bauer, Zoya
Truitt, Anjali R
Jarvik, Jeffrey G
author_facet Lavallee, Danielle C
Comstock, Bryan
Scott, Mary R
Avins, Andrew L
Nerenz, David R
Edwards, Todd C
Patrick, Donald L
Lawrence, Sarah O
Bauer, Zoya
Truitt, Anjali R
Jarvik, Jeffrey G
author_sort Lavallee, Danielle C
collection PubMed
description BACKGROUND: Involving patients as partners in research is a defining characteristic of patient-centered outcomes research (PCOR). While patients’ experiential knowledge of a health condition or treatment may yield research priorities not reflected by researchers and policy makers, the methods for identifying and effectively collaborating with patients are still evolving. Patient registries and crowdsourcing may offer ease of access and convenience to both researchers and patients. Surveys and focus groups, including online modalities, have been described for prioritizing research topics. However, little is known about how these different methods compare in producing consistent priorities and similar perceptions of engagement quality among participants. OBJECTIVE: The aims of this study are (1) to compare how different engagement methods used to elicit patient priorities for research perform as measured by rankings for priorities generated and participant satisfaction; and (2) to determine characteristics of individuals choosing to participate in research prioritization activities. METHODS: Participants in the Back pain Outcomes using Longitudinal Data (BOLD) patient registry, established to evaluate the natural history of back pain among individuals 65 years and older, and participants on the Amazon Mechanical Turk (MTurk) crowdsourcing platform, to provide input on priorities for research via a questionnaire, are invited. For BOLD participants, we subsequently randomize interested respondents to 1 of 3 interactive prioritization activities to further develop priorities: a Delphi panel, an online crowd voting activity, or an in-person facilitated prioritization activity using nominal group technique (NGT). Participants involved in each activity complete a survey to evaluate the quality of the experience and a subset of these participants discuss their experience further in an interview. Descriptive statistics are used to characterize the rankings produced by each method and compare the top 5 rated topics resulting from each prioritization activity. We use rank-ordered logistic regression models to identify associations of the ranked priority topics with baseline patient characteristics. We analyze responses to the evaluation using a mixed-methods approach wherein we tabulate responses to Likert-scale questions and use content analysis to enumerate themes emerging from interviews for the 3 activities. RESULTS: In Phase I, we invite approximately 3000 BOLD participants and 500 Amazon MTurk workers to complete a research topic prioritization survey. Based on these results, we include additional topics into a subsequent prioritization survey. In Phase II, we invite BOLD participants to join 1 of 3 activities: 90 participants for Delphi panel, 100 participants for crowd voting, and 60 participants for focus groups. Of the Phase II participants, 30 will be interviewed to evaluate the activities. CONCLUSIONS: This study informs decisions about how to conduct outreach to patient registry participants for providing input on research priorities, how individuals 65 years and older wish to participate in engagement activities, and how different research prioritization methods compare in terms of rankings generated and participant satisfaction.
format Online
Article
Text
id pubmed-5608987
institution National Center for Biotechnology Information
language English
publishDate 2017
publisher JMIR Publications
record_format MEDLINE/PubMed
spelling pubmed-56089872017-09-27 Study of Methods for Assessing Research Topic Elicitation and pRioritization (SMARTER): Study Protocol to Compare Qualitative Research Methods and Advance Patient Engagement in Research Lavallee, Danielle C Comstock, Bryan Scott, Mary R Avins, Andrew L Nerenz, David R Edwards, Todd C Patrick, Donald L Lawrence, Sarah O Bauer, Zoya Truitt, Anjali R Jarvik, Jeffrey G JMIR Res Protoc Protocol BACKGROUND: Involving patients as partners in research is a defining characteristic of patient-centered outcomes research (PCOR). While patients’ experiential knowledge of a health condition or treatment may yield research priorities not reflected by researchers and policy makers, the methods for identifying and effectively collaborating with patients are still evolving. Patient registries and crowdsourcing may offer ease of access and convenience to both researchers and patients. Surveys and focus groups, including online modalities, have been described for prioritizing research topics. However, little is known about how these different methods compare in producing consistent priorities and similar perceptions of engagement quality among participants. OBJECTIVE: The aims of this study are (1) to compare how different engagement methods used to elicit patient priorities for research perform as measured by rankings for priorities generated and participant satisfaction; and (2) to determine characteristics of individuals choosing to participate in research prioritization activities. METHODS: Participants in the Back pain Outcomes using Longitudinal Data (BOLD) patient registry, established to evaluate the natural history of back pain among individuals 65 years and older, and participants on the Amazon Mechanical Turk (MTurk) crowdsourcing platform, to provide input on priorities for research via a questionnaire, are invited. For BOLD participants, we subsequently randomize interested respondents to 1 of 3 interactive prioritization activities to further develop priorities: a Delphi panel, an online crowd voting activity, or an in-person facilitated prioritization activity using nominal group technique (NGT). Participants involved in each activity complete a survey to evaluate the quality of the experience and a subset of these participants discuss their experience further in an interview. Descriptive statistics are used to characterize the rankings produced by each method and compare the top 5 rated topics resulting from each prioritization activity. We use rank-ordered logistic regression models to identify associations of the ranked priority topics with baseline patient characteristics. We analyze responses to the evaluation using a mixed-methods approach wherein we tabulate responses to Likert-scale questions and use content analysis to enumerate themes emerging from interviews for the 3 activities. RESULTS: In Phase I, we invite approximately 3000 BOLD participants and 500 Amazon MTurk workers to complete a research topic prioritization survey. Based on these results, we include additional topics into a subsequent prioritization survey. In Phase II, we invite BOLD participants to join 1 of 3 activities: 90 participants for Delphi panel, 100 participants for crowd voting, and 60 participants for focus groups. Of the Phase II participants, 30 will be interviewed to evaluate the activities. CONCLUSIONS: This study informs decisions about how to conduct outreach to patient registry participants for providing input on research priorities, how individuals 65 years and older wish to participate in engagement activities, and how different research prioritization methods compare in terms of rankings generated and participant satisfaction. JMIR Publications 2017-09-07 /pmc/articles/PMC5608987/ /pubmed/28882810 http://dx.doi.org/10.2196/resprot.7565 Text en ©Danielle C Lavallee, Bryan Comstock, Mary R Scott, Andrew L Avins, David R Nerenz, Todd C Edwards, Donald L Patrick, Sarah O Lawrence, Zoya Bauer, Anjali R Truitt, Jeffrey G Jarvik. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 07.09.2017. https://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included.
spellingShingle Protocol
Lavallee, Danielle C
Comstock, Bryan
Scott, Mary R
Avins, Andrew L
Nerenz, David R
Edwards, Todd C
Patrick, Donald L
Lawrence, Sarah O
Bauer, Zoya
Truitt, Anjali R
Jarvik, Jeffrey G
Study of Methods for Assessing Research Topic Elicitation and pRioritization (SMARTER): Study Protocol to Compare Qualitative Research Methods and Advance Patient Engagement in Research
title Study of Methods for Assessing Research Topic Elicitation and pRioritization (SMARTER): Study Protocol to Compare Qualitative Research Methods and Advance Patient Engagement in Research
title_full Study of Methods for Assessing Research Topic Elicitation and pRioritization (SMARTER): Study Protocol to Compare Qualitative Research Methods and Advance Patient Engagement in Research
title_fullStr Study of Methods for Assessing Research Topic Elicitation and pRioritization (SMARTER): Study Protocol to Compare Qualitative Research Methods and Advance Patient Engagement in Research
title_full_unstemmed Study of Methods for Assessing Research Topic Elicitation and pRioritization (SMARTER): Study Protocol to Compare Qualitative Research Methods and Advance Patient Engagement in Research
title_short Study of Methods for Assessing Research Topic Elicitation and pRioritization (SMARTER): Study Protocol to Compare Qualitative Research Methods and Advance Patient Engagement in Research
title_sort study of methods for assessing research topic elicitation and prioritization (smarter): study protocol to compare qualitative research methods and advance patient engagement in research
topic Protocol
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5608987/
https://www.ncbi.nlm.nih.gov/pubmed/28882810
http://dx.doi.org/10.2196/resprot.7565
work_keys_str_mv AT lavalleedaniellec studyofmethodsforassessingresearchtopicelicitationandprioritizationsmarterstudyprotocoltocomparequalitativeresearchmethodsandadvancepatientengagementinresearch
AT comstockbryan studyofmethodsforassessingresearchtopicelicitationandprioritizationsmarterstudyprotocoltocomparequalitativeresearchmethodsandadvancepatientengagementinresearch
AT scottmaryr studyofmethodsforassessingresearchtopicelicitationandprioritizationsmarterstudyprotocoltocomparequalitativeresearchmethodsandadvancepatientengagementinresearch
AT avinsandrewl studyofmethodsforassessingresearchtopicelicitationandprioritizationsmarterstudyprotocoltocomparequalitativeresearchmethodsandadvancepatientengagementinresearch
AT nerenzdavidr studyofmethodsforassessingresearchtopicelicitationandprioritizationsmarterstudyprotocoltocomparequalitativeresearchmethodsandadvancepatientengagementinresearch
AT edwardstoddc studyofmethodsforassessingresearchtopicelicitationandprioritizationsmarterstudyprotocoltocomparequalitativeresearchmethodsandadvancepatientengagementinresearch
AT patrickdonaldl studyofmethodsforassessingresearchtopicelicitationandprioritizationsmarterstudyprotocoltocomparequalitativeresearchmethodsandadvancepatientengagementinresearch
AT lawrencesaraho studyofmethodsforassessingresearchtopicelicitationandprioritizationsmarterstudyprotocoltocomparequalitativeresearchmethodsandadvancepatientengagementinresearch
AT bauerzoya studyofmethodsforassessingresearchtopicelicitationandprioritizationsmarterstudyprotocoltocomparequalitativeresearchmethodsandadvancepatientengagementinresearch
AT truittanjalir studyofmethodsforassessingresearchtopicelicitationandprioritizationsmarterstudyprotocoltocomparequalitativeresearchmethodsandadvancepatientengagementinresearch
AT jarvikjeffreyg studyofmethodsforassessingresearchtopicelicitationandprioritizationsmarterstudyprotocoltocomparequalitativeresearchmethodsandadvancepatientengagementinresearch