Malika Muhammad (they/them) just joined the RPAC recently and was asked to share their experience and thoughts about their research journey, the importance of research and joining the RPAC as our spotlight research participant for this edition! The following are their responses.

1) Tell us a little about you...

I am a Non-binary Sickle Cell Warrior! My favorite music artists are Beyoncé & Kehlani. I enjoy being outside in the sun, all kinds of art, and innovating makeup looks. I’m a huge advocate for BIPOC+, LGBTQIA+, and Community Health. My zodiac sign is Pisces!

2) Can you share a little bit about your journey at Cincinnati Children’s, including your research experiences?

I was a CCHMC patient since after birth to age 21. I have been in various research studies from questionnaires to MRI studies to blood draws and medications. Typically, the focus was to track my development as a person living with Sickle Cell Disease (SS) or to help treat my symptoms. I was born in 1999 so I’ve experienced a lot of progress in helping to find a cure. In 2020, I began to work for CCHMC as a Community Health Worker on a research study to help SCD teens transition! I have since become a Certified CHW and now, I consult on multiple research projects to help improve Health Equity. The RPAC is a brand-new experience for me, and I’m so grateful to represent SCD Warriors and our Transgender communities. I was thrilled to see a project that exists to include more voices from all walks of life. It’s beautiful to see the patients have a say in what they’d like to see from research!

5) What motivated you to participate in research?

I feel like my motivation was different for each study. For the most part, I was genuinely curious about the impact of what the research could provide! The research I did seemed like it was going to help future generations of Sickle Cell patients. I appreciate research with good intentions, especially if it includes diverse communities of people. I was interested in how the medicines I took for research could improve my general well-being, and I wanted to know if I could feel a difference. Also, I am a data person, so I was interested in seeing the progress and results as well!

7) Why did you join the RPAC? What has been surprising to you about the RPAC?

I joined RPAC to use my voice with a council of representatives to help change how our communities get our research information. I want more representation from the youth. These are the people CCHMC works for, and we need more opportunities to express our ideas and interests! The RPAC has been a very welcoming environment and I’m learning new ways that research works as well. It’s a win-win to be informed and to be consulted with!

11) What would you tell your peers about research who are hesitant to participate?

Try looking at research as a learning opportunity! See what you can know more about and how the research works. If you have questions, ask away, and talk about your challenges too! The researchers are there to help you understand the process and uncover insights to your conditions. No matter the length of the study, you have the chance to grow. You could explore a part of science and technology you never knew about. You have a new opportunity to develop your health, and it’s cool to learn what works for you and what doesn’t!

12) What would you say to researchers about the RPAC?

I would tell more researchers to come to RPAC to hear from the people you study! Get to learn the population you serve. Change your approach and do something different than you’ve always done. Get out of your comfort zone and explore the lives of your patients. If you want to see more retention, more progress, and more collaboration, then you would really benefit from showing up at our communities. The RPAC is a great place to start!

About the RPAC and WE C-RAB. The RPAC and WE C-RAB are resources available to anyone at Cincinnati Children’s Hospital interested in learning the research participant or community perspective and improving how research is conducted at the hospital or out in the community. If you are interested in seeking feedback from one of these groups at one of our meetings, or through electronic survey, contact Julie Wijesooriya.

July CRP Monthly Meeting Research Participant Panel

Every year in July the Clinical Research Professionals’ (CRP) monthly meeting offers CCHMC clinical research staff the chance to hear directly from research participants about their experience in participating in research. Each year participants from varied research study experiences share their perspectives, including why they participate, what went well and what could be better.

On July 26, 2023 seven research participants/family members shared their research journey stories:

• A mom with 2 young children who both are participating in a rare disease study

• A sickle cell research participant, community health worker who has been on study staff working with sickle cell adolescents

• A mother and daughter sharing their story of participating in many studies through the years

• An adult participant who has done 3 studies through Gamble, including a COVID study, motivated by the death of a loved one

• A mother and daughter who shared the experience of participating in research at another institution while clinical care is happening at CCHMC

CRP Leadership/WE C-RAB Collaboration Lunch n’ Learns

The CRP Education Committee, along with the Leadership Committee, also began a Lunch n’ Learn series through collaboration with the West End Community Research Advisory Board (WE C-RAB). Two lunch n’ Learns have been held this year so far, on May 12th and August 30th.

At each event, four WE C-RAB members dialogued with CRPs about conducting community research and sharing their perspectives about participating in research. Topics covered ranged from the consent process to recruitment and creating greater connections with local communities.

Research Coordinator Jordan Baker talks through the PRECISE-ED Study with WE C-RAB member MaeLesha Lee in the consent role play.

Learnings/Takeaways

The following are some of the takeaways shared at these events about what to matters to participants and community members when conducting human subject research:

• Be Clear and Transparent. Thoroughly answer questions, explain timelines and procedures thoroughly, and remind participant of voluntariness – this helps with feelings of safety.

• Coordinate and combine! As much as possible, research and medical teams should collaborate to combine appointments (time commitment is a challenge) and procedures (avoid multiple separate sample collections, etc.) as much as possible.

• Check-in between visits (longitudinal studies). In the case of a longitudinal study with large time gaps, remember to check in more frequently with participants and give more reminders between visits – feels more personal and helps ensure a reduction in study attrition.

• Share results/data. Share individual test results and study data whenever possible – helps participant understand their contribution and provides incentive (study newsletter with updates).

• Involve Families in decision-making. In the case of rare disease studies, the medical team’s willingness to involve/consider options helped the parent to feel empowered and part of the decision-making process.

• Personal Touch Matters: Be personable and build trust. Offer a personal touch like remembering face/name/personal details – avoid treating participants like just a number or “lab rat”. Show you are paying attention and care.

• Thoughtfully Approach about Research.  Consider the appropriateness of your timing when approaching a hospitalized patient – they may be very ill at the time or recovering from major surgery. Parents of hospitalized children are under a great deal of stress. Start by asking how they are doing – this gets their attention and allows them to clear their head for that moment.

• Be Mindful of Accessibility. Keep patient’s accessibility needs in mind when scheduling visits and procedures.

• Create Environment Conducive to Speaking Up/Asking Questions. Create a space where the parent/patient feels comfortable/empowered to speak up about concerns.

• Ways to engage more with local communities:

  • Word of mouth.

  • Connect with local organizations related to your area of interest.

  • Build relationships with community members and accommodate their needs.

  • Go to PTA/community meetings and local events to be present, engage and build relationships.

  • The ideal community/research partnership benefits both sides.

Consent Tips

• Start Simply with “The Ask.” At initial contact, simplify what you need from the participant and say it up front.  Potential Subjects can get a better idea if it’s something they can or want to do before going through the entire consent.

• Avoid Acronyms/Scientific Jargon. Don’t use a lot of acronyms or scientific jargon when describing the research study – explain things in layman’s terms – many people do not have a scientific or research background.

• Use Visuals. Use visuals/schedule diagrams to explain studies with multiple timepoints and sample collections, etc.

• Break Often for Questions/Check for Understanding. Ask frequently if the participant needs anything clarified – don’t wait until the end of a 20–30-minute consent to see if they have any questions.

About the RPAC and WE C-RAB: The RPAC and WE C-RAB are resources available to anyone at Cincinnati Children’s Hospital interested in learning the research participant or community perspective and improving how research is conducted at the hospital or out in the community. If you are interested in seeking feedback from one of these groups at one of our meetings, or through electronic survey, contact Julie Wijesooriya.

Leslie Wieber joined the Research Participant Advisory Council (RPAC) in November of 2022. In addition to the RPAC, Leslie has served on the Family Advisory Council for the Division of Developmental and Behavioral Pediatrics for the past 4 years. She lives in Taylor Mill, KY with her husband of 16 years and her three sons, Brock (14), Drew (13) and Tyrus (11). Her engagement with research began when her 3 sons were diagnosed with Fragile X Syndrome in 2012. They dove right into any and all research studies they qualified for. “We truly believe there are better treatments and maybe even a cure for Fragile X Syndrome, so we continuously participate in research to help ourselves and other families,” Leslie said.

She loves anything outdoors and goes "hiking" with her boys a lot. “My husband is 6'9" tall so we always try to find Bigfoot in the woods because he's ‘big like Dad’! What began as a fun game to get them outside often has turned into people they know sending them Bigfoot themed merchandise and articles from across the country,” says Leslie. Besides hiking, she loves reading, baking, playing in volleyball leagues with friends and traveling on fun little weekend adventures with her family.

“Patients and families are critical in helping the professionals with better treatment in every department of Cincinnati Children's Hospital.” –  Leslie

What motivated you to participate in research?

For us it's always been a no-brainer to participate in research. We have trusted our professionals when they say it is safe for our boys or myself and we have experienced Direct results from research studies we've participated in. Such as when my youngest learned to talk at age 7, by participating in a clinical trial.

Overall, has participating in research studies been a positive experience for you? Please explain.

Besides the direct results we've experienced, participating in research has also allowed my sons to become and stay familiar with the hospital which prevents some fear and anxiety the next time we return. We like that we stay fresh in the minds of our fragile X doctors and research team so that when I have an issue that comes up, they already know our son's well and they can help us tackle whatever we are dealing with. Things like EEGs and blood draws become "easier" because we participate so often.

What would you say to others about research and participating in research?

I would encourage others to give research a try because I think all of us are searching for more personal attention from a hospital that is so large and in our experience the more often you go the more nurses and doctors get to know you and even if they don't see you on a regular basis they are going to remember your name and something about you or your family. When you participate in research you are helping your own family and the greater good of the community. Professionals and researchers cannot further medicine without the help of patients and Families. It feels good to do our part!

How has being on the RPAC helped you?

I think it has reminded me there's a whole wide world of patients and families outside of our special needs world which is why we are at the hospital 90% of the time. Sure, we have friends with complex medical needs, but it is a learning experience to be among families that have research experience in much different parts of the hospital.

What would you say to researchers about the RPAC?...about why they should come to the RPAC?

I would say that many do not know about the research in individual departments. You should absolutely get in front of the RPAC to make your cases known because we are from all walks of life throughout the hospital and we all have our own Circle of friends and family we go back and share it with so the word just constantly keeps spreading.

About the RPAC and WE C-RAB. The RPAC and WE C-RAB are resources available to anyone at Cincinnati Children’s Hospital interested in learning the research participant or community perspective and improving how research is conducted at the hospital or out in the community. If you are interested in seeking feedback from one of these groups at one of our meetings, or through electronic survey, contact Julie Wijesooriya.

Learn more about the Research Participant Advisory Group including the RPAC and WE C-RAB and how they can be a resource for your research.

WE C-RAB members share about research. (L-R: Bobby Rogers, Jackie Humphries & Luwana Pettus-Oglesby)

On Saturday, May 6th the West End Community Research Advisory Board (WE C-RAB) hosted a community Stop the Bleed and CPR/AED trainings. “We (the WE C-RAB) had identified the need for this kind of training for the community and were excited to be able to bring this opportunity to Seven Hills Neighborhood Houses community center through our research partners,” said President of the WE C-RAB, Luwana Pettus-Olgesby. The event, called “WE Care to Be Safe”, brought together partnering researchers who have come to the WE C-RAB for feedback, with the Whitney Strong Foundation to provide hands-on life-saving education to the community. Community members were invited directly by WE C-RAB members, as well as through the community center.

Danea Cloyd of the Whitney Strong Foundation demonstrates packing a wound

Pediatric Emergency Medicine Fellow, Cindy Chang, M.D., conducted the Stop the Bleed training with assistance from Michelle Eckerle, M.D. from pediatric emergency medicine and Danea Cloyd from the Whitney Strong Foundation (WSF). The WSF, which is focused on ending gun violence and loss of life, provided tourniquet kits for all participants who completed the training. Dr. Chang had previously come to the WE C-RAB seeking guidance and feedback on her research around conducting the Stop the Bleed with youth. Adam Powell, M.D., pediatric cardiologist, led the CPR and AED training with Drs. Chang and Eckerle assisting. Dr. Powell had come to the WE C-RAB seeking input on a research study involving male high school basketball players and heart health.  

Cindy Chang, M.D. works with WE C-RAB member Vonnie Tawwab on how the tourniquet works

Nearly 50 people were trained, including WE C-RAB members, Seven Hills staff, Woodlawn Parks and Recreation staff and Hughes High School students, among the many community members attending. Each participant was given a Stop the Bleed certificate of completion, a tourniquet kit and a first aid kit, as well as information about participating in research, including tearpads for a sampling of studies. “I work in the ER, so nearly every encounter in that environment is stressful for the families. It was wonderful to be able to interact with the community in a more relaxed environment and give them health information they wanted and seemed to find valuable,” said Dr. Eckerle. Dr. Powell expressed how refreshing it was “to talk to a group so invested and eager in learning about these important skills because they want to support their community. It made for a joyful interaction for me.” The WE C-RAB plans to host 1-2 more community-researcher partnering events this year.

Adam Powell, M.D. presents AED training

About the RPAC and WE C-RAB. The RPAC and WE C-RAB are resources available to across the Academic Health Center interested in learning the research participant or community perspective and improving how research is conducted at the hospital or out in the community. If you are interested in seeking feedback from one of these groups at one of our meetings, or through electronic survey, contact Julie Wijesooriya or learn more here.

Sharon Watkins and Abbey Rowland with the new research board in the CAA lobby

Community Action Agency’s (CAA) Community Engagement Manager, Sharon Watkins, has been a member of CCTST’s Community Partnership Committee for 5 years and has been helping the CCTST reach the community more effectively. It is through her years of service to the CCTST and learning more about the role of research in improving health outcomes in the community that she recently advocated to bring research education and information about research studies to the CAA clientele. “Our community clientele don’t likely know about the importance of research and how they can help,” says Sharon. “I’d like to help connect them with what I’ve been learning because I think it will help all of us.”

The Community Action Agency is county-wide organization that provides a number of services to the Hamilton County area including a home relief program, employment program, mobile food pantry, tax preparation, and Head Start program, among other services. CAA headquarters, located in Bond Hill, also holds a Cincinnati Public Library branch and offers opportunities for the surrounding community to utilize the space. With so many varied services under one roof, Sharon saw the opportunity to help spread the information about the importance of research and research participation to their diverse community.

Julie Wijesooriya and Abbey Rowland outside CAA

With the help of the Center for Clinical and Translational Science and Training’s (CCTST) Research Community Liaison, Julie Wijesooriya, research marketing staff, Jane Howie and Abbey Rowland, and community consultant, Terresa Adams, the CAA now has 4 research study boards/stands featuring research educational materials throughout the CAA building in places where clientele can easily access them and learn more about participating in research. These studies boards will be maintained by the research marketing staff, with a focus on studies that are recruiting the various clientele coming into the building. In addition to the materials, Terresa and Julie have provided some training on the basics of human subject research and research participation so that CAA staff can better guide and inform their clientele about studies. They will provide additional training for more CAA staff in the near future.

Jane Howie and Julie Wijesooriya putting together one of the boards for CAA

This is just the beginning of what both Sharon and Julie see as an opportunity to grow the community understanding of the role of research in improving health outcomes and creating a greater positive connection between community and research. “I am excited for this on-going partnership and tangible way we can connect community with research, and vice versa, for the benefit of all,” says Sharon.

Maelesha joined the Research Participant Advisory Council (RPAC) and the West End Community Research Advisory Board (WE C-RAB) in August of 2021. While she was initially recruited to participate in the WE C-RAB as a lifelong resident of the West End, she also quickly joined the RPAC due to her and her son’s participation in the longitudinal Imprint Study at Children’s which is following newborns through age 4 to predict how they go through life with illnesses.

She’s the proud mom of 2 boys, Kamryn (2 years old) and Kaiden (8 years old) and loves to dance in her spare time. She’s also an RN at University Hospital in the Surgical Intensive Care Unit and has participated in many studies since she was a child. 

Q. What motivated you to participate in research?

Coming from my background of science as a registered nurse and being on that side of policy change, changes in dosage of medication etc., we tend to always talk about evidence based practice. I found it very interesting to get a glimpse of the other side of medicine. It’s a very engaging process, to see it from the very beginning – how things start off as a question and then to see how it expands into a study, which eventually leads to changes in policies, changes in dosage etc.

Q.What has been your favorite aspect of the RPAC and/or research project/study to come to the RPAC?

It is just so fascinating to see it in full cycle. Being a part of RPAC has given me an opportunity to see the full circle of research and how it leads to changes in the healthcare system as a whole.

Q.What would you tell your peers about research who are hesitant to participate?

Being a member of RPAC/WE CRAB has shed light on things that were not visible to me at first. I am beginning to understand how important it is to participate in research. I realize now that there are not many people who look like me or come from the same background as me participating in research. They will never have the answers to solve our problems without our participation. I am doing this to help make a better environment for my future grandchildren. It is very important for the future of our world.

Q.How did you hear about any research in which you participated in? How were you approached or introduced to the studies?

With the Imprint study I was approached at West Chester Hospital where I was having my prenatal appointments. This was the hospital where I wanted to deliver Kamryn. I was 30 weeks pregnant. Initially I had jumped into the study thinking it was going to be about the flu but – as this was around the end of 2019/early 2020 – ended up being about COVID as well. Because of this, I ended up having to consent twice. They were drawing blood as part of my routine checkup appointments and would just ask if they could piggy back on those samples. They then gave me the rundown of what I should expect to happen once Kamryn was born. They explained to me how they would take samples of saliva, stool and blood from Kamryn. In the beginning they were taking nasal Swabs weekly and stool samples monthly, along with the blood draws. Now it is not as intense as before. We just send in monthly samples of stool and weekly nasal swabs.”

Q. Overall has participating in research studies been a positive experience for you?

It has been a positive experience overall. It has been very impactful when it comes to learning new things about myself. It has made me curious and willing to ask questions. It has piqued my interest and has always been a positive situation. I have not only participated in research on the medical level, I have also participated in marketing research for companies like P&G.  I once participated in a study on tampons. I had to store them in the freezer and they would come and pick them up after I used them. I would also have to journal about them. It was fun because I got to express how I felt, I had an opinion to give. It paid too. As a younger person, there was no better feeling than having that cold hard cash in an envelope! I remember making one hundred bucks to do that tampon study for a week. 

Q.What would you say to researchers about RPAC/ WE CRAB about why they should come to the RPAC?

Expand your reach. We can be helpful, if you come to a wall and have no idea what direction you should go we could be helpful with direction. We can help spark new ideas that you probably have never thought about. We could also be that connection to help you get the word out to the community. You could bounce ideas off of us and ask questions you might not be as comfortable asking with other groups of people. I love the conversations that happen between the researchers and us.

About the RPAC and WE C-RAB. The RPAC and WE C-RAB are resources available to anyone at Cincinnati Children’s Hospital interested in learning the research participant or community perspective and improving how research is conducted at the hospital or out in the community. If you are interested in seeking feedback from one of these groups at one of our meetings, or through electronic survey, contact Julie Wijesooriya, julie.wijesooriya@cchmc.org.

Research Participant Panel at July 2021 CRP Monthly Meeting

On July 13th six research participants shared their experience in participating in studies which included the COVID-19 vaccine study, condition-specific studies and even choosing not to participate in certain studies.  They offered insights that reflected each of their unique research journeys but highlighted some common themes, including 1) the need for more awareness and education around research and the results of research and 2) the need for greater and more diverse recruitment efforts. You can see the panel here.

There is also a bonus interview with a teacher/mom COVID-19 vaccine study participant (Laura Palmer who is a teacher, as well as a mom of an immunocompromised son with a rare condition).

Panelists shared their answers to the following two questions about what matters most to them:

When thinking about engaging with potential research participants (patients/family/community), I think it is important to focus on…

• Anna: their (the participant’s) stories because everyone has a different experience with medical treatment and research in the past.

• Amanda: giving enough information about the risks and outcomes of similar studies in the past because knowing outcomes, good or bad, can help an individual/family make their decision on if it is right for them.

• Melanie: the recruitment aspect so that opportunities reach a diverse group of individuals. The research participant opportunities should be extremely accessible and easy. Young people (like me), a lot of the time, are not aware of the clinical trial opportunities. With more awareness of the opportunities and education, the engagement likely will rise.

• Camilla: the end result/bigger picture because I was able to participate in something that is valuable and made a difference – that the vaccine was approved. It is powerful if they could understand that they become part of a bigger cause.

• Jacob: On the greater impact because it can show the percentages of about how many people it affects/helps.

One thing that I think could help improve the research participant experience is…

• Jacob: On-boarding…increasing awareness of research studies.   

• Melanie: Incentives for advocacy beyond the study. If the participant is given materials to further educate friends, family, and their community sharing their experience, statistics, or just simply their general experience in a clinical trial, that can make a huge impact.

• Isabel: More knowledge and education of the test/study results.

• Amanda: To make sure the participant/family is in a good place to be approached. (speak with medical staff prior to approaching in patient families)

• Anna: Consistent follow-up regarding how the results of the research are used.

RPAC is Seeking Adolescent (11-17 year old) CCHMC Research Participants.

Know of a research participant who you think would be comfortable sharing their thoughts/opinions to help improve research? If so, we are seeking 11-17 year old participants from across the research hospital spectrum to join our monthly virtual RPAC meeting (4th Thurs of month 5:30 – 7pm)? Contact Julie Wijesooriya for more information or to refer someone, julie.wijesooriya@cchmc.org.

Click here to learn about the RPAG. 

West End Community Research Advisory Board (WE C-RAB)

• Presentation to CCHMC’s CRPs: On June 23 the leadership of the West End Community Research Advisory Board (WE C-RAB) presented at CCHMC’s Clinical Research Professionals (CRP) Monthly Meeting, sharing their perspective on community research and ways to better engage with community around research. You can see the full presentation here.

• Bringing COVID-19 Vaccines to the West End: CCHMC, the City of Cincinnati and WE C-CRAB, among other partners, brought a vaccine clinic to the West End at Laurel Playground on May 21 and June 11.  To help educate the community about the vaccines, WE C-RAB worked hard to spread the word by talking to neighbors, posting flyers and yard signs, and sharing vaccine information like the community-created book from partner, We Engage 4 Health, called Vaccine Victory. As a result, 93 people received a vaccine the first day and another 66 received the vaccine the second day!

Research Participant Advisory Council (RPAC)

• RPAC is Seeking Adolescent (11-17 year old) CCHMC Research Participants: Know of a research participant who you think would be comfortable sharing their thoughts/opinions to help improve research? If so, we are seeking 11-17 year old participants from across the research hospital spectrum to join our monthly virtual RPAC meeting (fourth Thursday of each month 5:30 – 7pm). Contact Julie Wijesooriya for more information or to refer someone, julie.wijesooriya@cchmc.org.

• Save the Date! CCHMC’s CRP July Monthly Meeting: Research Participant Panel – July 13 @ 2pm: The panelists will include adult and youth COVID-19 vaccine research participants, as well as additional adult and youth research participants sharing their perspectives on participating in research.

The Research Participant Advisory Group (RPAG) engages our research participants and community in ways to improve how research is done at Cincinnati Children’s Hospital Medical Center (CCHMC) and out in community, ensuring that the participant/community voice is heard and part of the research process, from design to dissemination.  Click here to learn more.

Story released by Cincinnati WLWT. Click here to read the story, including video and photos, on the WLWT website. CCTST RPAG was involved in the promotion of this event.

CINCINNATI — Music, tents, food trucks and people from the neighborhood made the vaccine event at Laurel Park in the West End look more like a spring celebration Friday.

“It feels like a family reunion of sorts,” Cincinnati Children’s Hospital senior director for community relations Monica Mitchell said.

Cincinnati Children’s Hospital, the Cincinnati Health Department and community partners put on the vaccine clinic.

“We wanted to put it in the community where we know people are. We also wanted to reach people in areas where the vaccine uptake has been a little low,” Cincinnati Health commissioner Dr. Melba Moore said.

Dozens of people were able to walk from their homes to get the vaccine or to talk about their concerns with the vaccine.

“People are literally, I believe, one conversation away. One conversation,” Moore said.

“We’re giving people the chance to ask questions, get their questions answered and that could be just the thing people need to get the vaccination,” Mitchell said.

For at least one person, persuasion was in a picture.

“It really hit me when I saw her picture. It really hit me,” said Clarence Mallory who stopped by the vaccination site on his way to work.

Mallory was undecided about getting the vaccine until he saw a large poster size picture of Lillian Carr at the site. Mallory and many in the community knew Carr from the local neighborhood house. She was known for helping people any way she could here.

Carr died of COVID-19.

“I didn’t have to think twice when I saw her picture. I just came on over,” Mallory said.

Friends of Carr said they feel like she’s still helping in the neighborhood, reminding people of the importance of getting the vaccine.

Story released by Cincinnati WLWT. Click here to read the story, including video and photos, on the WLWT website.

The Research Participant Advisory Group (RPAG) engages our research participants and community in ways to improve how research is done at Cincinnati Children’s Hospital Medical Center (CCHMC) and out in community, ensuring that the participant/community voice is heard and part of the research process, from design to dissemination. 

So, what do the members think about their engagement on the Research Participant Advisory Council (RPAC) and West End Community Research Advisory Board (WE C-RAB)? Here are a few of their quotes on the matter:

“Helping researchers understand how to invite those in lower-resourced neighborhoods to participate.”
– WE C-RAB Member

“Having a voice for my own children and others.”
– RPAC Member

“Making research better for the community”
– WE C-RAB Member 

“Making a difference and learning about research.”
– RPAC Member

“Sharing our voices with researchers”
– WE C-RAB Member 

These are reminders of the reason for this work: Bi-directional connection, voice and improvement between research and participants/community.

Recent updates from Research Participant Advisory Group (RPAG):

• New CCHMC Family Partners Webpage, including RPAG. The RPAG, CCHMC Patient and Family Engagement, Champions Program, and Anderson Center have collaborated to create a new CCHMC Family Partners webpage that is a one-stop-shop for patients and families who would like to engage with the hospital in meaningful ways, such as advocacy and improving hospital care and research. The webpage also includes a link to the new RPAG webpage on the CCHMC website!  Researchers/staff can direct families to these webpages as a way for them to get involved with the hospital.

West End Community Research Advisory Board (WE C-RAB):

• Partnering to Help Conduct 2nd Round of Surveys on COVID-19 Behaviors and Vaccine Hesitancy in the West End Community. The WE C-RAB members continue to help collect survey data for a COVID-19 study on social distancing behaviors and vaccine hesitancy in their West End community. They are currently conducting a follow-up survey focused on vaccine hesitancy. Their efforts have helped to ensure greater diversity in the survey respondents.  The community’s survey responses are increasing understanding of hesitancy concerns and guiding future messaging.

• Bringing COVID-19 Vaccines to the West End. WE C-RAB is working on a pop-up COVID-19 vaccine site on May 21 in the West End using the Children’s Mobile Care Unit. As part of this effort, the WE C-RAB will be distributing flyers around the neighborhood, helping with pre-registration and sharing information about vaccines and COVID-19.

Research Participant Advisory Council (RPAC)

• RPAC is Seeking Adolescent CCHMC Research Participants. Know of a research participant who you think would be comfortable sharing their thoughts/opinions to help improve research? If so, we are seeking 11-17 year old participants from across the research hospital spectrum to join our monthly virtual RPAC meeting (4th Thursday of month 5:30 – 7pm). Contact Julie Wijesooriya for more information or to refer someone, julie.wijesooriya@cchmc.org.

The CCTST Research Participant Advisory Group (RPAG) has just celebrated its 6-year anniversary of working with a variety of researchers and staff over the years to improve research across the Academic Health Center (AHC). Over the years, the RPAG has evolved to include new and varied ways that the participant and community perspective can be included and engaged in the research process to help lead us to even better health outcomes.

The RPAG engages our research participants and community in ways to improve how research is done at Cincinnati Children’s Hospital Medical Center (CCHMC) and out in community, ensuring that the participant/community voice is heard and part of the research process, from design to dissemination.  

There are two advisory groups that meet on a regular basis. The first is the Research Participant Advisory Council (RPAC), which is focused on research taking place at CCHMC. The RPAC is comprised of research participants (adults and youth) and their family members.

The second is the West End Community Research Advisory Board (WE C-RAB), which is based out of a community center in the West End and is focused on community research. The WE C-RAB is comprised of adults and youth who live, work and/or have some community tie to the West End.

Both advisory groups meet monthly from August to June for a 1.5 hour meeting (currently virtually) to discuss research-focused initiatives, hospital- and community-wide research concerns and specific research studies, providing input from the participant/community perspective.

The following are examples of how the RPAG has helped others and can help with your research-related work:

• Review of surveys, consent forms, recruitment materials, websites and other online interactive apps or data gathering tools

• Identification of participants for specific focus groups & Beta testing focus group scripts

• Co-engagement in research design & co-facilitating of a study intervention in community

• Recruitment: best places and ways to recruit, as well as actual recruitment

  • Participant recruitment as advisors to PCORI or QI Projects

  • Participant/community recruitment for research-related educational discussions and panels

The RPAG also helps identify research participants and community members to provide their perspective about research as part of individual improvement projects, research grants, and other specific projects, as well as identify community members for CCHMC’s and UC’s Institutional Review Boards.

Over the past year, the RPAG has shown versatility in its ability to provide feedback virtually, including for research related to COVID-19 and regarding health equity in research:

• Helping with messaging and recruitment of underrepresented minorities in our COVID-19 vaccine studies and addressing vaccine hesitancy

• Review of surveys and testing of focus group scripts for a COVID-19 social distancing behaviors study

• Partnering with CCHMC Clinical Research Professionals (CRP) group to address health equity and social justice in research occurring at the hospital

You can learn more about the RPAG on our website or contact Julie Wijesooriya Julie.wijesooriya@cchmc.org to learn more or talk through the best way the RPAG can help you.

The RPAG is always looking for participants and/or their family members who would love to help us with research!  Please contact Julie if you know anyone who like to be part of the RPAG.

CCTST Research Participant Advisory Council Member, Carla Howard, was recently featured on an episode of Lifetime television show, The Balancing Act.  In the special edition episode, titled, Behind the Mystery, viewers meet Carla, and learn about her life as a Sickle Cell Anemia survivor.

Sickle Cell Anemia is a blood disorder that changes normal, round red blood cells into a rigid, crescent moon shape. These abnormal cells can block blood vessels, impede oxygen flow and cause extreme pain.

As a patient advocate, Carla’s work spans both locally and nationally. Not only did she share her experience on The Balancing Act, but at the local level, she is member of the Cincinnati Children’s Hospital Medical Center (CCHMC) Champions program, has participated on the new CCHMC Building campaign Parent/Patient Advisory committee, and has been involved in numerous CCHMC videos, Radiothons and other media advertisements. Carla is also a member of the CCTST Research Patient Advisory Council (RPAC).

The CCTST RPAC at CCHMC consists of research participants (children and adults) and parents/guardians of participants and range in age from 13 to 58 years. The objective of the RPAC is to partner research participants and families with members of the research community to provide guidance on how to improve research across the Academic Health Center, with a focus on participant experiences and building relationships of trust. The group aims to establish best practices and improvement initiatives to implement these changes, humanize the face of research at the institution and in the surrounding communities, and provides an infrastructure for investigators wishing to include patients and families in their research and study design.

Carla explains that she participates in research in support of all the children living with Sickle Cell Anemia. She uses her voice and experiences to provide better care and access to the great things going on at Cincinnati Children’s.  “There were no therapeutic offerings like there are today when I was growing up, so to help develop new treatment options is invaluable,” shares Carla.

Click here to see Carla on The Balancing Act – Behind the Mystery Special Edition.

More about Carla
Carla L. Howard is the Client Support Manager for K.E.L.L.Y. Youth Services where she is responsible for initial screenings of services, personnel management and providing case management support to direct care staff. As a seasoned professional, she has a keen interest in helping others through her ability to build relationships, connecting people and support of the greater impact of the community. In addition to her career, she is also actively involved at her church (Corinthian Baptist Church), Delta Sigma Theta Sorority, Inc. (Cincinnati Alumnae Chapter), Hoxworth Blood Center and Cincinnati Children’s Hospital. Carla is the mother to one daughter, Bria, and a native Cincinnatian. She attended Xavier University (Cincinnati) where she received her degree in Business Administration/Information Systems. She enjoys volunteering, traveling, and spending time with family.

Julie Wijesooriya, CCTST Research Community Liaison, attended the PRIMR 2020 Advancing Ethical Research Conference in December to present a poster on Harnessing the Power of the Participant Perspective Through Research Participant Advisory Groups.

To view a PDF of the poster, click here.

View fullsize

The Research Participant Advisory Council (RPAC) and West End Community Research Advisory Board (WE C-RAB) have been busy providing feedback across the AHC for more than three years now to the research community across the AHC, touching on all aspects of research from the consenting documents and process, research design and recruitment materials and process, to effective community research methods. The following are brief updates about their work.

RPAC Update:

Now in its 3rd year of helping improve research at Children’s, the RPAC continues to provide invaluable feedback to the Cincinnati Children’s Hospital Medical Center (CCHMC) research community. Some examples of their work, in partnership with others, include:

• Assisting in the creation of an e-Screener which has been launched institutional-wide, and has created a more efficient and “customer-friendly” recruitment process.

• Suggested improvements to the way in-patient and surgery research study recruitment is done, reviewing when and how to approach for research;

• Feedback about the Discover Together Biobank that reflected the participant perspective, including changing the name from Discovery Warehouse to what it is. As a next step, the RPAC will provide feedback on the accompanying website at their next meeting.

• Feedback as part of the “community consultation” for Exception From Informed Consent (EFIC) studies. They just had their first review and another one is on its way.

• Assisting additional researchers on specific research questions tied to their research studies.

• An on-going project with the ORCRA as an integral partner providing input on the coming Common Rule-mandated “Key Information” section of the informed consent form which has come with very little guidance on what this section should look like. The RPAC has helped identify what should be in the key information section and reviewed different consenting formats, with the goal of updating the CCHMC informed consent template. At their next meeting, the RPAC will participate in a set of focus groups including additional youth (11- 17 years old), to review and update the assent template as well.

WE C-RAB Update:

Serving as a resource to community researchers since June 2016, the WE C-RAB continues to provide invaluable feedback to researchers interested in improving how community research is done, as well as using Community-based Participatory Research (CBPR) practices to form partnerships with researchers who are matched with the West End’s health goals to improve the health of West End residents. Some examples of the projects and work include:

• Providing input for more than 10 researchers seeking feedback on either potential or existing community research that has relevance with the West End;

• In collaboration with research and community partners, held a Research Health Day this past spring that highlighted the WE C-RAB-identified health priorities, including basic first aid, stress reduction, asthma and health literacy;

• Feedback as part of the “community consultation” for Exception From Informed Consent (EFIC) studies. Just had their first review and next one is on its way;

• Partnership with researcher Melinda Butsch Kovacic, MPH, PhD, CAHS Associate Dean of Research, on WE Engage 4 Health a citizen science-based grant designed to engage citizens in health science and science research learning, including complex health and environmental questions relevant to the West End.

• Partnership with Tiffany Grant, PhD, Interim Assistant Director for Research and Informatics, UC Health Sciences Library on a grant focused on making the Seven Hills Neighborhood Houses, where WE C-RAB meets, a “Health Hub” in the neighborhood to improve health literacy. This includes having health information and blood pressure kiosks on-site, as well as holding cooking classes to reduce hypertension.  

RPAC and WE C-RAB are resources for ALL in the AHC research community.

If you would like to learn more about how the RPAC or WE C-RAB can help with your research study or project, visit our webpage or contact Julie Wijesooriya at julie.wijesooriya@cchmc.org or 513-517-1076.

This past February the Research Participant Advisory Council (RPAC) celebrated its 1-year anniversary, marking a year of providing guidance on how to improve the research participant experience across the academic health center. Established by a group led by Becca Harper DNP, RN, CTRC Director of Operations, the RPAC has provided invaluable feedback to Cincinnati Children’s Hospital Medical Center (CCHMC) over the past year on research participant issues such as consent/assent, Clincards and genetic reports for families. As a result of their work, a more participant-friendly assent form has been created; changes have been made to the hospital provided Clincard information sheet and process, and a participant-minded genetic pamphlet and video has been crafted.

The 30-member RPAC consists of research participants (children and adults) and parents/guardians of participants and range in age from 12 to 58 years.  The objectives of the RPAC are to:

• Partner research participants and families with members of the research community to provide guidance on how to improve research across the academic health center, with a focus on participant experiences and building relationships of trust.

  • Establish best practices and improvement initiatives to implement these changes.

  • Provide a formal referral system for other patient and family advisory councils across the institution looking to engage in research.

• Humanize the face of research at the institution and in the surrounding communities.

• Provide an infrastructure for investigators wishing to include patients and families in their research and study design.

In January, Julie Wijesooriya, MPA, CTRC Research Community Liaison, came on board to CCHMC and is now facilitating the RPAC. In addition to working with the current RPAC at CCHMC, she has been working in partnership with Melinda Butsch-Kovacic, PhD, Associate Professor in Asthma Research and Alexis Kidd, Director of Seven Hills Neighborhood Houses, to create a community-based advisory board in the West End at Seven Hills. This 20-member West End Community Research Advisory Board will meet for the first time in June to address community research occurring in their neighborhood, with the following objectives:

• Engaging researchers to ensure they support the West End’s health goals in addition to collecting their study data

• Providing input on how to make research easier and more understandable for the West End community

• Guiding what research happens in the West End.

As part of their first meetings, they will have a 2-part training on participant research ethics, to better understand what protections are in place for research participants.

Need feedback for a Study/Project? Want to engage the community in research? The RPAC can help…
Need Research Participant input or a focus group for your study or project? Want ideas about how to engage the community? The RPAC and West End Research Community Advisory Board meetings are a great way to get feedback.

What?
Research Participant Advisory Council (RPAC) and West End Community Research Advisory Group

Who can utilize these Advisory Groups?
Anyone doing research-related work that would like feedback/input from research participants – regarding research at Children’s, as well as in the community.

When do these Advisory Groups meet? 
Both advisory groups meet monthly in the evening throughout the year.

How would I schedule a meeting with one of these Advisory Groups?
Staff who are interested in utilizing either the RPAC or West End Community Research Advisory Board for their research studies or other projects can contact Julie Wijesooriya.

Also, if you are interested in helping with this work by serving as a staff representative or expert, please contact us. We would love to have your expertise!

The CCTST sponsors the RPAC and West End Research Community Advisory Board and provides monetary operations support.