Valuing Patient Perspectives in Clinical Research
CONNECT-HF: A Mother With Young Children Wants To Help People Through Diagnosis
One way the DCRI takes into account the important perspectives and voices of women is through Patient Advisory Groups that advise our clinical research projects. The CONNECT-HF project is a nationwide clinical trial for people who are leaving the hospital after receiving treatment for heart failure. The goal of the CONNECT-HF Trial is to help improve care for people with heart failure so that they can live healthier lives and have a better chance of staying out of the hospital.
Early in the development of CONNECT-HF, the research team brought together a patient advisory group to help develop materials and plans for the trial. The group members, who are all people living with heart failure, named themselves the Cardi-Yacks. Two members of the Cardi-Yacks are women, and they bring their own perspectives of living with heart failure to the discussion.
Kirsten, a Cardi-Yack and mom who was diagnosed with heart failure when she was 40 years old, said that she wanted to be a part of the advisory group because she had trouble finding information for people in her situation.
“I was looking for information about how deal with young children and still manage your disease,” Kirsten said. “I’d like to be able to help people get through the experience when they first get diagnosed, because that was a very scary time for me, thinking about possibly dying and leaving my children. I want them to know that there is light at the end of the tunnel.”
To learn more about Kirsten and Fredonia, another woman in the Cardi-Yack group, watch these videos:
AEGIS-II: A Latina Woman Shares What She Learns With Her Community
Another DCRI project that incorporates a patient advisory group to gather diverse perspectives is the AEGIS-II study. AEGIS-II is studying if an investigational drug called CSL112 can help protect people who recently experienced a heart attack from having another one. Maria Ortiz, from San Elizario, Texas, is one of eight total members and one of three women in the AEGIS-II patient advisory group.
Maria, who has had two heart attacks, said she did not get enough information about her condition after her first heart attack. She did not understand the problem with her heart, and said she just got a pacemaker because her doctor told her she needed it. She said that the materials AEGIS-II study is providing to help people understand their heart condition is a big improvement for patients.
“I can help more people like me, and people who are coming behind me who don’t know about their illness,” she said. “By learning every step of research through the advisory committee, I can help my community better understand research and heart problems.”
ADAPTABLE: A Man Uses His Experience to Contribute to Research
In ADAPTABLE, nine patient partners called the Adaptors make up a diverse group of integral team members who are passionate about representing and reflecting the best interests, concerns, and welfare of potential, current, and future clinical research participants. ADAPTABLE is a pragmatic study comparing the effectiveness of two different daily doses (81 mg and 325 mg) of aspirin widely used to prevent heart attacks and strokes in individuals living with heart disease.
Tom McCormick, from Columbia, Maryland, got involved in ADAPTABLE after his primary care doctor convinced him that by sharing his experience, he could make a useful contribution to the study. He was instructed to take aspirin after he was diagnosed with angina and went through bypass surgery nine years later.
“I think it is important that patients be involved in medical research because many times, what is important to the doctor is not the same as what is important to the patient,” McCormick said.
McCormick said he enjoys being involved in what he sees as a worthwhile endeavor. He is intrigued by ADAPTABLE’s use of electronic medical records and thinks that the wealth of data included in these records will make it possible to do research and produce results on a wider scale. You can learn more about Tom in this video: