The overall goal of this protocol is to involve people who face disproportionate burden of disease in identifying and prioritizing unanswered questions about their conditions so that their views can be included in research priority setting by funders and researchers. This protocol can help answer key questions in healthcare research priority setting, including what research questions matter most to underserved communities who are most at risk for health problems? The main advantages of this protocol are that it generates in-depth knowledge of community members'research priorities and provide a strong foundation for ongoing patient and public participation in research.
In this video, we show how the protocol was used to identify the research priorities of women at high social demographic risk for preterm birth. The protocol was refined and implemented in partnership with community-based organizations serving potential participants. The UCSF Preterm Birth Initiative used the findings from this protocol to inform our call for research proposals, the review of those proposals, and our decision of which to fund.
This protocol enables mothers of preterm babies to make their voices heard so that researchers can focus on questions that matter most to them. When the participants arrive, provide them name tags. Take care of the required documentation.
Nourish them. Kindly provide required childcare and so forth. During this time, introduce the staff.
Then begin the session by leading the group in an exercise intended to bring their attention to the present moment, such as a simple, five-minute guided meditation. After the guided meditation, formally thank the participants for taking part in the study. Then take about 10 minutes to introduce the purpose of the project, answer any immediate questions, and explain how this is the first of two sessions.
Next, spend about 15 minutes explaining the significance of research and the importance of this panel discussion in relation to research. Now give the participants the opportunity to introduce themselves and start a 25-minute discussion on unanswered questions in pregnancy and childbirth. Aim the discussion at collecting research questions from the participants.
Write down questions as they come up. We do as a mother to help the doctor help us. Right, or understand how important-Understand how, yeah-How important that is to your birth process.Yeah.
Cause I think that's important to capture. Like, I'll be back in x, y, and z time, right? That's a communication issue.
But then I also think one is the check-in. Like, why don't them come more often, right? So there's a time piece, but then there's also a you need to tell, like, follow up and tell me when you're gonna come back, right?
Okay, and then there's a tie-in to the question above that, which is, like, why are nurses doing these things versus why are doctors doing other-Paraphrasing a few participant statements in the form of questions and then verifying their questions that they actually have usually does the trick. Next, take about 40 minutes to discuss preterm birth and care of preterm babies. It may be necessary to refocus the discussion from time to time.
Do you have any questions about midwives or birth centers? So my second child, I had a midwife that did the delivery, but I didn't know she was a midwife until after I delivered. So that was, she was great, but afterwards, and I didn't realize it till I saw her badge, and I was like, you're not the doctor.
And I'm like, no ma'am, and she thought that I had been told. I don't know if I, I guess I was supposed to be asked was it okay? But I wasn't.
I mean, I didn't complain because she was good. But so I guess that's a question too. Are you, if they're gonna have a midwife come deliver, are they supposed to come and ask you if that's okay?
If the group is unable to generate questions or uncertainties related to preterm birth, then read a few of the examples from research priorities of prior groups or from the literature. In a timely manner, close the discussion and prepare the participants for the following session. Then close the session with remarks focused on gratitude and invite the participants to take part in a group photo.
In preparation, be certain to contact the community-based organization and partner well in advance and confirm timing, staffing, and logistics. Also, be sure to communicate with participants to confirm their attendance and arrange transportation and childcare if needed. Greet the participants as in the first session.
Then proceed with introducing the scope of the second session. This should take about 10 minutes. Begin with recalling the questions generated.
The questions that you have that weren't answered during your pregnancy-related care, and we really started writing on the walls, remember that? So as we were doing that, I think at that time we came up with 42 questions in real time that you all generated that were important to you. In the time since we've seen you, we went back, listened to the tape, okay?
We had a transcript typed up of the tape so that we could see what questions we missed. Next, explain that the goal of this session is to prioritize the questions for research funding. That's what you see in front of you.
So not only are we going to rank and prioritize the questions you generated after we edit them and after we read through them as a group, but then we're gonna think about do these categories fit? Are they right? And then we're gonna also write those and edit them Does that make sense?
So that's what we've been doing since we saw you guys. Now provide each participant with a copy of the finalized questions organized by topic. Read the questions out loud, pausing to ask if they are phrased correctly with the right wording.
Spend about 20 minutes on this task. Why does magnesium sulfate, that's what MgSo4 stands for, magnesium sulfate, we might want to write it out, and steroids stop labor? And what is the impact of multiple treatments on development?
And the multiple treatments that were being talked about at that time were progesterone and aspirin. So you can, ASA is shorthand for aspirin. Intermittently ask if the discussion has brought any other questions to mind.
If so, write them on a card and ask participants to place the card under the appropriate topic heading or start a new heading if needed. I guess when I read this question, I think of, like, how when our babies were in the NICU, like, it was very limited who could come and visit. So it was like, only if you're family and brother and sister.
So what could be done to support parents of a NICU baby in coordinating and/or managing other family members? Yes.Yes.Okay.Now spend 10 minutes conducting the first round of prioritization. Ask each participant to mark the 15 most important questions on the printed list.
Then have each place marks next to those questions on the wall. Then remove the questions from the board which were not ranked as important by any participant. Set those questions aside.
Now conduct a second round of prioritization. Over the next 10 to 15 minutes, have the participants place another set of dots by the question or questions that are most important to them. During this time, the participants can talk freely and lobby for their ideas.
A single participant may even put all their dots next to a single question. Next, lay out all the topic headings on the table, modifying them as needed. Proceed with a discussion on the topic headings to rank them in order of importance.
What goes above that? We got pre-conception considerations. Wait, are we, we're doing this based on the questions we still have?
Like, can we do that? You can do it that way.Okay. Or you can just say just broadly.
We go to research questions that we want to have important UCSF. But what about the things? Cause we also provide this communities with some themes, right?
Oh, okay. So if you know in your mind that care is jacked up in Fresno and healthcare providers, we need as an initiative to do something about that, this should be number one. Or if you know that there's real issues around miscarriage, stillbirth, and we didn't really step here, then that should be first.
In session two, the most critical step is to get the group to work together to come to consensus on the research and topic priorities. It's important that all participants have a voice and a vote in the group consensus. Once all of the topics have been placed in order of importance, confirm that there is consensus.
Now prioritize the questions which received the most votes and have the participants consider the priorities of the remaining questions in relation to how they prioritized research topics. So I have a question about this number one, the way it's worded, is it harmful for babies to be separated and is there a risk to family bonding in the NICU? We had, for each of those, we had sort of the mirror question about what can be done to make this better, you know, what can be done to support families to do more of this and what can, to reduce separation, and what can be done to have better bonding?
So I'm just wondering, now that you see the list, do you want it framed as a risk question or do you want it framed as a support question? What can be done to improve so that there's less separation and more bonding? Cause it's sort of, it'll have an impact on how people go about it.
And I-Reorder the questions based on the participants'responses as needed to find an ordering that is agreeable to all. Okay, so we ended up with a top 10. Love it.
Okay, these are the marching orders to the researchers. And we have the categories. We have the categories listed off.
Now spend 10 minutes debriefing participants. Collect feedback about the two sessions, such as what needs more emphasis and if the participants desired to be further involved in the dissemination of their questions to community-based organization partners. 14 participants were invited by two community-based organizations serving pregnant women from neighborhoods of high sociodemographic risk for preterm birth in San Francisco.
The participants were between 20 to 42 years old, had between one and five children, of which 21%were born preterm, and they identified predominantly as African American. From the first group sessions, a combined 135 unique research questions were generated. Those questions were then grouped under 11 overarching research topic themes and prioritized during the second session.
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. The 10 specific questions spanned nine research topics. The prioritized lists resulting can then be included in research priority setting by funders and researchers.
Once mastered, this technique can be used to rapidly and deeply engage underrepresented minority individuals in research about the health problems they face. Partnership with trusted community-based organizations and skilled facilitation are essential to quickly building and transferring trust among participants so that they are comfortable to speak freely and to generate rich data. Because of the focus on health research, at least one of the facilitators should have a strong working knowledge of clinical care of the research evidence for the specific health condition under discussion.
Before using this method, it's really important to have a clear intention and plan for how these research priorities will inform the research strategy and the decisions for funding. The protocol provides a strong foundation for ongoing patient and public involvement in research. It may be customized for use with communities affected by other health conditions to achieve meaningful involvement in research strategy and funding to address those conditions.
