Name: a novel method for involving women of color at high risk for preterm birth in research priority setting
Uploaded: 2018-01-12T12:30:00
Duration: 14 min 43 s
Description: Watch this Scientific Journal Video about A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting at JoVE.com

This research was supported by the UCSF California Preterm Birth Initiative. The authors wish to thank Brittany Edwards, Lisa Edwards and Olga Nunez for their assistance and the participants for sharing their experiences and views.

<ol>
	<li>Mullins, C. D., Abdulhalim, A. M., Lavallee, D. C. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Continuous+patient+engagement+in+comparative+effectiveness+research.">Continuous patient engagement in comparative effectiveness research.</a> JAMA. 307 (15), 1587-1588 (2012).</li><li>Belone, L., Lucero, J. E., Duran, B., Tafoya, G., Baker, E. A., Chan, D., et al. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Community-based+participatory+research+conceptual+model:+Community+partner+consultation+and+face+Validity.">Community-based participatory research conceptual model: Community partner consultation and face Validity.</a> Qual Health Res. 26 (1), 117-135 (2016).</li><li>Viswanathan, M., Ammerman, A., Eng, E., Gartlehner, G., Lohr, K. N., Griffith, D., et al. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Community-based+participatory+research:+Assessing+the+evidence.">Community-based participatory research: Assessing the evidence.</a> Evid Rep Technol Assess (Summ). (99), 1-8 (2004).</li><li>Selby, J. V., Forsythe, L., Sox, H. C. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Stakeholder-Driven+Comparative+Effectiveness+Research:+An+Update+From+PCORI.">Stakeholder-Driven Comparative Effectiveness Research: An Update From PCORI.</a> JAMA. 314 (21), 2235-2236 (2015).</li><li>Reay, H., Arulkumaran, N., Brett, S. J. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Priorities+for+future+intensive+care+research+in+the+UK:+results+of+a+James+Lind+Alliance+Priority+Setting+Partnership.">Priorities for future intensive care research in the UK: results of a James Lind Alliance Priority Setting Partnership.</a> J Intens Care Soc. 15 (4), 288-296 (2014).</li><li>Wald, H. L., Leykum, L. K., Mattison, M. L., Vasilevskis, E. E., Meltzer, D. O. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=A+patient-centered+research+agenda+for+the+care+of+the+acutely+ill+older+patient.">A patient-centered research agenda for the care of the acutely ill older patient.</a> J Hosp Med. May. 10 (5), 318-327 (2015).</li><li>Reverby, S. M. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Listening+to+narratives+from+the+Tuskegee+syphilis+study.">Listening to narratives from the Tuskegee syphilis study.</a> Lancet. 377 (9778), 1646-1647 (2011).</li><li>Ocloo, J., Matthews, R. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=From+tokenism+to+empowerment:+progressing+patient+and+public+involvement+in+healthcare+improvement.">From tokenism to empowerment: progressing patient and public involvement in healthcare improvement.</a> BMJ Qual Saf. 25, 626-632 (2016).</li><li>Behrman, R. E., Butler, A. S. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> Preterm Birth: Causes, Consequences, and Prevention. , (2007).</li><li>MacDorman, M. F. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Race+and+ethnic+disparities+in+fetal+mortality,+preterm+birth,+and+infant+mortality+in+the+United+States:+an+overview.">Race and ethnic disparities in fetal mortality, preterm birth, and infant mortality in the United States: an overview.</a> Semin Perinatol. 35 (4), 200-208 (2011).</li><li>Braveman, P. A., Heck, K., Egerter, S., Marchi, K. S., Dominguez, T. P., Cubbin, C., Fingar, K., Pearson, J. A., Curtis, M. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=The+role+of+socioeconomic+factors+in+Black-White+disparities+in+preterm+birth.">The role of socioeconomic factors in Black-White disparities in preterm birth.</a> Am J Public Health. Apr. 105 (4), 694-702 (2015).</li><li>Tucker Edmonds, B., Mogul, M., Shea, J. A. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Understanding+low-income+African+American+women's+expectations,+preferences,+and+priorities+in+prenatal+care.">Understanding low-income African American women's expectations, preferences, and priorities in prenatal care.</a> Fam Comm Health. 38 (2), 149-157 (2015).</li><li>Duley, L., Uhm, S., Oliver, S. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Top+15+UK+research+priorities+for+preterm+birth.">Top 15 UK research priorities for preterm birth.</a> Lancet. 383 (9934), 2041-2042 (2014).</li><li>Ulm, S., Crowe, S., Dowling, I., Oliver, S. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=The+process+and+outcomes+of+setting+research+priorities+about+preterm+birth+-+a+collaborative+partnership.">The process and outcomes of setting research priorities about preterm birth - a collaborative partnership.</a> Infant. 10 (6), 178-181 (2014).</li><li>Braun, V., Clarke, V. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Using+thematic+analysis+in+psychology.">Using thematic analysis in psychology.</a> Qualitative Research in Psychology. 3 (2), 77-101 (2006).</li><li>Frank, L., Forsythe, L., Ellis, L., Schrandt, S., Sheridan, S., Gerson, J., Konopka, K., Daugherty, S. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Conceptual+and+practical+foundations+of+patient+engagement+in+research+at+the+patient-centered+outcomes+research+institute.">Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute.</a> Qual Life Res. 24 (5), 1033-1041 (2015).</li></ol>

The authors have nothing to disclose.

The RPAC protocol was specifically developed to guide initial, exploratory research priority setting involvement with under-represented minority individuals who are at high risk for health problems and who face disproportionate burden of disease. It was first trialed with women at high socio-demographic risk for preterm birth to generate a prioritized list of researchable questions and topics about pregnancy, birth and neonatal care and treatment. The prioritized lists resulting from RPAC can then be included in research priority setting by funders and researchers. The RPAC follows the principles of national-level patient engagement rubrics, such as the Patient Centered Outcome Research Institute9,21 in the US and the UK JLA Priority Setting Partnership.10 The RPAC uses elements of the Priority Setting Partnership prioritization protocol, but differs from the Priority Setting Partnership protocol in significant ways. First, the RPAC focuses solely on members of communities affected by a health condition and does not include front-line clinicians whose voices might be privileged in the discussion (even unconsciously by the participants themselves). Second, the RPAC protocol is designed to generate the initial question list de novo from within the group, rather than from prior research literature or surveys. Third, the RPAC is designed to probe more deeply the priorities, experiences and context in which those priorities develop, of a small number of individuals with expertise in the condition by virtue of their individual and community experience, whereas the Priority Setting Partnership protocol is designed to engage a large number of individuals and organizational representatives with broad knowledge of the condition and its impact on patients and families in the research priority setting process. However, the use of RPAC and the JLA Priority Setting Partnerships are not mutually exclusive and RPAC could naturally lead to the formation of a JLA-style Priority Setting Partnership or, conversely JLA Priority Setting Partnership work might lead to use of RPAC for deeper involvement of specific communities affected by a health condition. Once research priorities have been established with patient and public involvement by one or both of these methods, community based participatory research methods can be used to co-design and carry out specific research projects.3,4
The representative results described in this paper illustrate the power of the RPAC protocol to rapidly and deeply engage with women at high socio-demographic risk for preterm birth in identifying the specific research questions and broader research topics of greatest importance to them and their community. These women had no prior research experience and had no prior relationship with the facilitators or their organization. None of them worked in a clinical setting or had any scientific training. Yet, by the end of the first two-hour session, they had generated over 135 unique, researchable questions based on their own experience of care and unanswered health questions as well as from their general curiosity about maternal and infant health that was awakened in the group discussion with other women like themselves. Moreover, as part of the two-session protocol, participants engaged in deep discussion about their own health and healthcare experiences during pregnancy, childbirth and parenting. These data provided a rich substrate for further qualitative analysis of these experiences, with a particular focus on patient-provider and patient-health system interactions.
The RPAC protocol is new and there are a number of issues to consider in evaluating whether or not it is appropriate for other investigations. First, having a clear intention and plan for how the research priorities will inform research strategy and funding decisions is essential, as failure to do so will compromise credibility focus group sessions between the researchers and community. Second, having a CBO partner who is trusted and well-integrated into the community of interest is also essential for success. Third, researchers should be prepared to engage in discussion with the CBO and with RPAC participants about personal and historical misconduct in research because this may arise when the topic of research is raised with communities of color.12 The RPAC protocol has been used thus far only with African-American and Latina women in California at high socio-demographic risk for preterm birth. Therefore, the generalizability of the method requires further evaluation. Nonetheless, it is a promising approach for exploratory research priority setting involvement with under-represented minority individuals who are at high risk for and are disproportionately affected by other health problems.
Partnership with a trusted CBO and skilled facilitation are essential to quickly building and transferring trust among the participants so that they feel comfortable to speak freely and to generate rich data. As with all facilitated group activities, the quality of the output is greatly dependent on the skills of the facilitator to engage the participants in the topic and with each other. Because of the focus on health research, at least one of the facilitators should have a strong working knowledge of clinical care and of the research evidence for the specific health condition under discussion. This is important so that the facilitator can provide example questions if necessary to stimulate discussion or steer the conversation to explore other aspect of the health condition that are not spontaneously brought forth by the participants. At the same time, the facilitators must refrain from providing answers to any research questions posed by the participants or from engaging in any teaching or counseling during this session. Such actions can quickly stifle participants from developing further questions or exploring uncertainties and is to be avoided at all costs. Facilitators should work with the CBO partner to offer participants health information or research evidence after the completion of session 2.
Several important outcomes emerged from the use of RPAC with women at high social-demographic risk for preterm birth. First, the research priority lists generated from the RPAC work in San Francisco, Oakland and Fresno California were included in request for proposals issued by PTBi-CA. Second, some of the women who participated in RPAC applied to and were selected for the PTBi-CA Community Advisory Board and participated in proposal review and recommendation for funding of proposals submitted in response to the request for proposals. This input has been invaluable for the PTBi-CA, ensuring that the commissioned research addresses questions of importance to science and to the community the science is intended to benefit (see brief video example: https://www.youtube.com/watch?v=df1qRu4wzJo).
In summary, the RPAC protocol is a useful method for generating rapid, in-depth knowledge of the research priorities of women at high socio-demographic risk for preterm birth. The RPAC protocol provides a strong foundation for ongoing patient and public involvement in research and can lead to meaningful partnership in research funding decisions to better address the epidemic of preterm birth. The protocol may be further customized for use with underserved minority individuals from communities affected by other health condition to achieve meaningful involvement in decisions about research foci and funding to address those health conditions.

Patient and public involvement in healthcare research improves relevance and credibility of results, increases enrollment and retention, and accelerates translation into clinical practice.1 Although the terms are often used interchangeably, engagement, participation, and involvement represent three different levels of contact between researchers and individual patients or the general public. Engagement is the lowest level and includes activities of researchers and institutions to share information and knowledge about research with patients and the public. Participation is the activity of study subjects taking part in research studies. Involvement is the highest level of contact, where patients, members of affected communities or of the general public are actively involved in shaping research projects from design to dissemination, including as co-researchers.2,3 The partnership between community members or representatives and researchers or academic institutions in co-development of research questions and co-ownership of research projects is commonly known as community based participatory research.4 These methods have been effective in increasing the level of involvement of patients and the public in research as well as the relevance of research findings to affected communities.5 More recently, research funders have begun to recognize the importance of patient and public involvement in strategic research agenda setting and to seek the engagement/involvement of patients and the public in defining areas of focus for research funding and in prioritizing what research to fund. Patient and public involvement in research priority setting represents the highest level of involvement, and is upstream from community based participatory research. Patient and public involvement in research priority setting is essential for research funding strategy development so that requests for proposals and funding decisions reflect topics of greatest interest to the public as well as to the research community.6 There is a clear and growing international expectation that high quality research be conducted in partnership with patients and communities and not on them solely as research subjects.
Methods for patient and public involvement in research priority setting are relatively new and evolving. Thus far, major funders tend to solicit involvement of representatives from patient advocacy organizations with experience of patient and public involvement rather than directly from members of affected communities or the general public. The involvement of patients or patient representatives is usually as part of larger stakeholder groups that may include frontline healthcare professionals and industry through online survey methods and focus groups with predominantly professional stakeholders7,8,9, or &#39;town hall&#39; style meetings.9
The most well-established method for research patient and public involvement is the James Lind Alliance (JLA) Priority Setting Partnerships method. Established in 2004, the JLA Priority Setting Partnership method10 is a structured approach, bringing patients, their caregivers and clinician groups together to identify treatment uncertainties (i.e., questions about treatments which cannot be answered by existing research) which are important to all groups. The goals of the Priority Setting Partnerships are to reach consensus on the priority uncertainties and to produce a final list (often a &#34;top 10&#34;) of jointly agreed research priorities, and then to publicize the priorities widely to influence researchers and research funders to address them. The JLA Priority Setting Partnership method has been effectively used for a wide range of conditions. The JLA Guidebook10 provides a detailed step-by-step protocol for establishing and conducting Priority Setting Partnerships for any health topic. It consists of a multi-phase approach, beginning with an extensive literature review and online or postal surveys with a wide range of stakeholders to generate a comprehensive list of uncertainties on a particular health topic. Then, if needed, survey consensus methods, such as modified Delphi techniques, wherein repeated rounds of ranking (usually by questionnaires) and reporting back group results are used to achieve consensus and narrow the uncertainty list to a manageable number. The list is then presented to mixed stakeholder focus groups who use group consensus methods, such as Nominal Group technique, to rank the most important research topics and produce a prioritized list.7,8
Notably absent from the published literature on patient and public involvement in research priority setting is the involvement of patients and members of the public from under-represented minority groups. This exacerbates the disparities in patient and public involvement by under-represented minority populations in healthcare research overall,11 and perhaps perpetuates the mistrust resulting from historical misconduct of research, particularly with communities of color.12 Moreover, there has been very little focus on methods to specifically engage individuals from under-represented minority groups in research priority setting.11,13 This is a critical omission because without evidence of the effectiveness of the methods in successfully involving individuals from under-represented minority groups in research prioritization, there may be unintended consequences, such as privileging views of certain stakeholders leading to further disengagement of those minority groups. For example, the JLA Priority Setting Partnership 10 method does not specifically address the challenge of ensuring involvement of under-represented minority groups and there are several phases of the process where their views may be given lesser priority than other stakeholders. First, reliance on the literature and traditional stakeholder representative groups for the first level generation of uncertainties privileges the research that has been conducted based on priorities of the research community and established organizations, which do not represent well the uncertainties and questions of under-represented minority groups. Second, even with skilled facilitators and well-tested methods, holding consensus groups with under-represented minority individuals and healthcare professionals together might unintentionally privilege the voices and views of the professionals. Therefore, new methods are needed that focus on and develop capacity for under-represented minority groups to be involved in research priority setting, especially when they are disproportionately affected by serious health conditions.
One such health condition is preterm birth, defined as birth before completion of 37 weeks of gestation. Preterm birth is a complex condition with both medical and socio-demographic risk factors that is associated with numerous adverse maternal and infant outcomes, affecting the lives of children and families and costing many billions to society.14 African-American race, low socioeconomic status and limited education are among the strong, but largely unexplained risk factors for preterm birth.14,15,16,17 Until recently, there has been very little research on the experiences and views of women at high socio-demographic risk for preterm birth14 and preterm birth research priority setting in the United States has had no direct patient and public involvement. The first patient and public involvement in preterm birth research priority setting was reported in 2014 the United Kingdom (UK).18,19 Although groundbreaking for the field, the UK preterm birth Priority Setting Partnership16 did not include women at high socio-demographic risk for preterm birth, such as those at-risk due to social determinants of health or health disparities. Since these groups bear a disproportionate burden of disease, it is imperative that their view be included in research priority setting.
The UCSF California Preterm Birth Initiative (PTBi-CA) is a multi-year, philanthropically-funded research initiative to reduce the burden of the unchecked preterm birth epidemic in high-disparity regions of California (www.pretermbirth.ucsf.edu). PTBi-CA brings together researchers from across numerous specialties and disciplines, public health agencies and community leaders to work in direct partnership with women and families most affected by the epidemic. Women who have had a preterm birth and those who are at high socio-demographic risk for preterm birth and the frontline clinical and social care providers who work with these women and their families are involved at all stages of the research process &#8212; from developing the research priorities, designing research protocols, conducting studies, disseminating results and translation of findings to practice and policy.
Given the limited methods to specifically involve under-represented minority groups in research priority setting, and because it was not known if women of color at high socio-demographic risk for preterm birth would be interested or willing to engage in the research priority setting process, the established JLA Priority Setting Partnership method was not appropriate as a first step in patient and public involvement for this population and topic. This paper describes the protocol for a new method to initiate patient and public involvement, Research Prioritization by Affected Communities (RPAC), and describes its use with women at high socio-demographic risk for preterm birth. The goal of RPAC is to directly involve individuals from under-represented minority groups, in this case women of color, in identifying and prioritizing their unanswered questions about their health condition, in this case pregnancy, birth and neonatal care and treatment. The RPAC method enables discovery of the researchable unanswered research questions of greatest priority to the affected communities so that they can be included in research priority setting by funders and researchers. The UCSF PTBi-CA incorporated the research priorities of women at high socio-demographic risk for preterm birth in their request for proposals and included women who participated in the RPAC process in proposal review and funding decisions (see brief video example: https://www.youtube.com/watch?v=df1qRu4wzJo). The RPAC protocol can lead to meaningful partnership of individuals from communities affected by a health condition in decisions about research foci and funding.

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			<td>Session 1: Room arrangement and supplies</td>
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			<td>Room arrangement: Arrange tables and seating in a U-shape facing a large whiteboard or smooth wall (10 to 12 feet in length ideal) on which self-adhesive flip chart paper can be mounted and written on. If easels are used, have a minimum of 2, ideally 3)</td>
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			<td>Self-adhesive flip chart paper (at least 110 sheets)</td>
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			<td >Markers and pens</td>
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			<td>Pens and note-taking pads for all participants</td>
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			<td >Audio recorder</td>
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			<td >Name tags</td>
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			<td>Required forms (e.g., photo consents, reimbursement forms)</td>
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			<td>Options (but strongly recommended): Refreshments, gift cards or gifts to acknowledge participant time and contribution to the project</td>
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			<td>Session 2: Room arrangement and supplies</td>
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			<td>Room arrangement: Arrange tables and seating in a U-shape facing a large whiteboard or smooth wall (10 to 12 feet in length ideal) on which self-adhesive flip chart paper can be mounted and written on. If easels are used, have a minimum of 3, ideally 4)</td>
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			<td>Individual research questions (from Session 1 analysis) printed in large font on self-stick* half-sheets of 8.5 x 11 paper *If not available, also need tape or spray adhesive</td>
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			<td>Blank half-sheets (in a different color paper) for new questions generated in session 2</td>
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			<td>Research topics (from Session 1 analysis) printed in bold large font on self-stick* half-sheets of 8.5 x 11 paper *If not available, also need tape or spray adhesive</td>
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			<td>Blank half-sheets (in a different color paper) for new topics generated in session 2</td>
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			<td>Post-it flip chart paper (at least 15 sheets)</td>
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			<td>Markers and pens</td>
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			<td>Sticker dots in different colors or patterns &#8212; each participant will need 20 sticker dots in a different color or pattern (15 dots for round 1 and 5 dots for round 2 of the prioritization exercise)</td>
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			<td>Paper copies for all participants and facilitators with the research questions organized by topic</td>
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			<td>Audio recorder</td>
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			<td>Name tags</td>
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			<td>Required forms (e.g., photo consents, reimbursement forms)</td>
			<td></td>
			<td></td>
			<td></td>
		</tr>
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			<td>Options (but strongly recommended): Refreshments, gift cards or gifts to acknowledge participant time and contribution to the project</td>
			<td></td>
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</table>

a novel method for involving women of color at high risk for preterm birth in research priority setting

Involvement of patients and the public is now recognized to be essential for the good conduct of research. Patient and public involvement in research priority setting and funding decisions is only beginning to be recognized as important, and methods for doing so are nascent. This protocol describes the Research Prioritization by Affected Communities (RPAC) protocol and findings from its use with women at high socio-demographic risk for preterm birth. The goal was to directly involve these women in identifying and prioritizing their unanswered questions about pregnancy, birth and neonatal care, and treatment so that their views could be included in research priority setting by funders and researchers. The RPAC protocol may be used to meaningfully involve under-represented groups at high-risk for specific health problems, or those who face disproportionate burden of disease, in research strategy and funding priority setting.

The following results were derived from an ongoing project to involve women at high sociodemographic risk for preterm birth in the research strategy and funding priorities for the PTBI-CA in San Francisco, Oakland and Fresno, California. The representative results are from two CBOs serving women in San Francisco, CA: the Homeless Prenatal Program (HPP) and the Black Infant Health Program (BIH). The organizations either directly deliver or host a variety of services including prenatal, childbirth preparation and post-partum classes. Additional free services include case management, individualized life and goal planning, public health nurse consultation, referral services for medical, social, economic and mental health services and transportation. Staff at each organization invited clients who were pregnant or who had young preterm children to participate in the project.
There were 14 participants in total, 6 from HPP and 8 from BIH, ranging in age from 20 to 42. Of the participants&#39; total of 44 children (range 1 to 5 each), 21% (n=9) were born preterm. Participants self-identified as African-American (n=12), Latina (n=1), or Asian/Pacific Islander (n=1). Three of the women were pregnant at the time of the focus groups, 2 in the HPP groups and 1 in the BIH groups. Participants were compensated for their time. There was no attrition during the study period.
After removing questions posed by participants that had strong evidence from systematic reviews or national guidelines as well as duplicate questions between the two groups, a combined list of 135 unique research questions had been generated from the session 1 activities at the two sites. Using thematic analysis, the questions were grouped under 11 overarching research topic themes. These questions and topics were presented to each of the groups in session 2 and the top 10 (HPP) and top 15 (BIH) research questions were agreed by group consensus. Figure 1 shows the participants performing the dot voting to indicate their round 2 top priority research questions. The results from both groups were again examined together and duplicates removed, resulting in the final list of the combined top 10 specific research questions (Table 1) and top 9 research topics (Table 2).
During the course of the two-session protocol, participants spoke intimately about their own health and healthcare experiences. Participants reported that hearing other women tell their stories prompted them to share more about themselves. During each of the sessions there was discussion among participants about the impact of the women&#39;s healthcare experiences personally and on their community. These data were recorded and transcribed as part of the sessions and later subjected to qualitative analysis, adding context, meaning and, on occasion, suggestions for further research on the research priority topics identified as important by the women (data not shown). In the debriefing discussions at the close of session 2 at each site, all of the women reported that participation was a positive learning experience and all expressed interest in continued involvement with researchers.
<img alt="Figure 1" class="xfigimg" src="/files/ftp_upload/56220/56220fig1.jpg" /> 
Figure 1. Participants in Session 2 performing the dot voting to indicate their round 2 top priority research questions. <a href="https://cloudflare.jove.com/files/ftp_upload/56220/56220fig1large.jpg" target="_blank">Please click here to view a larger version of this figure.</a>
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	<tbody>
		<tr>
			<td>How does a mother&#8217;s stress affect the baby?</td>
		</tr>
		<tr>
			<td>What are the most effective ways to improve patient-provider communication, particularly when patients perceive insensitive and rude comments from health care workers?</td>
		</tr>
		<tr>
			<td>What is the most effective care for pregnancy and high-risk pregnancy? For example, if African American women are at higher risk, why isn&#8217;t there specialized care to improve outcomes?</td>
		</tr>
		<tr>
			<td>What causes Sudden Infant Death Syndrome?</td>
		</tr>
		<tr>
			<td>Does the type of insurance you have determine the type of care that you get, or the quality of your care and is care different based on insurance status or race?</td>
		</tr>
		<tr>
			<td>What could make hospital visits and in-hospital stays easier for families and what supports are most helpful for moms with children at home?</td>
		</tr>
		<tr>
			<td>What medicines are safe to take during pregnancy?</td>
		</tr>
		<tr>
			<td>How do birth plans help and how can the health care team better follow a woman&#8217;s birth plan?</td>
		</tr>
		<tr>
			<td>How do health care providers decide to involve Child Protective Services during pregnancy care when abuse and neglect are not clearly present?</td>
		</tr>
		<tr>
			<td>Could experienced moms be used more effectively for breastfeeding support?</td>
		</tr>
	</tbody>
</table>
Table 1. Top 10 specific research questions of women at high sociodemographic risk for preterm birth
<table border="1" fo:keep-together.within-page="1" fo:keep-with-next.within-page="always">
	<tbody>
		<tr>
			<td>Priority</td>
			<td colspan="4">Research topic</td>
		</tr>
		<tr>
			<td>1</td>
			<td colspan="4">Stress during pregnancy and its impact on women and infants</td>
		</tr>
		<tr>
			<td>2</td>
			<td colspan="4">Standards for monitoring and care of women with high risk pregnancies</td>
		</tr>
		<tr>
			<td>3</td>
			<td colspan="4">Impact of employment and insurance coverage on care and outcomes</td>
		</tr>
		<tr>
			<td>4</td>
			<td colspan="4">Safety of drugs and substances during pregnancy and for newborns</td>
		</tr>
		<tr>
			<td>5</td>
			<td colspan="4">Provider-patient communications and decision-making</td>
		</tr>
		<tr>
			<td>6</td>
			<td colspan="4">Breastfeeding support</td>
		</tr>
		<tr>
			<td>7</td>
			<td colspan="4">Standards for referral of women and families to social services</td>
		</tr>
		<tr>
			<td>8</td>
			<td colspan="4">Causes and prevention of Sudden Infant Death Syndrome</td>
		</tr>
		<tr>
			<td>9</td>
			<td colspan="4">Support for mothers and babies at home</td>
		</tr>
	</tbody>
</table>
Table 2. Priority research topics for women at high sociodemographic risk for preterm birth

Watch this Scientific Journal Video about A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting at JoVE.com

A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting

This manuscript describes the Research Prioritization by Affected Communities (RPAC) protocol and findings from its use with women at risk for preterm birth. Using the protocol, women identified and prioritized their unanswered questions about pregnancy, birth and neonatal care aimed at influencing research priority setting by funders and researchers.

Involvement of patients and the public is now recognized to be essential for the good conduct of research. Patient and public involvement in research ...

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