WASHINGTON, DC — Nurses have a duty to ensure that the right questions are asked as the collection of big data in healthcare expands faster than the nation’s ability to manage it responsibly, according to Patricia Brennan, RN, PhD, director of the National Library of Medicine in Bethesda, Maryland.
“It is the responsibility of nurses because of social policy, because of our social contract to use data wisely in the service of patients,” Brennan said here at the Oncology Nursing Society 2018 Annual Congress. “It is our responsibility to ask the right questions, to push and probe for the right kind of data, and to bring the right kind of insights into the care processes where we live.”
Connecting Cancer Patients to Trials
One way to help immediately is to weigh in on the National Cancer Institute’s request for ideas on how to better match cancer patients with clinical trials. The deadline for response is June 15.
It is our responsibility to ask the right questions, to push and probe for the right kind of data, and to bring the right kind of insights into the care processes where we live.
“This is an opportunity to advocate for your patients, to bring nurses’ special understanding into the discussion,” Brennan said. “You are a voice that must be heard as we think about how to accelerate knowledge and generate data that are relevant to understanding how to match patients to clinical trials.”
In addition, nurses can participate, and encourage their patients to participate, in the All of Us precision medicine project, which launched May 6. The National Institute of Health is looking for a diverse group of 1 million people to share information about their health, lifestyle, environment, and background, as previously described by Medscape Medical News.
“In one day, 20,000 people signed up,” Brennan reported. “Of the now over 40,000 who have been identified as being willing to be part of the All of Us program, 68% are from groups not usually represented in research studies.”
“Think about that for a moment,” she told the audience. “Unheard of!”
Nurses can also contribute ideas on what questions should be answered with the All of Us data gathered.
Data-Powered Health
Data-powered health is based on the idea is that data provide a biological, social, physical, and environmental context for patients, which informs their care. It is “a whole new game,” said Brennan.
It upends the idea that data are something stuffed into a packet and given to researchers. Instead, it serves as “vibrant interplay with our practices,” she said.
But data-powered health will require changes in the workforce.
Data science advances will only get into the patients’ hands through the power of nursing at the patients’ side.
“We need a small number of nurses to get into computer science, advanced data analytics, and advanced mathematics to become high-powered data scientists,” Brennan explained. “But we need a much larger group of nurse researchers and scientists to have the skills and insight on how to use and interpret data science and data analytics.”
“Data science advances will only get into the patients’ hands through the power of nursing at the patients’ side,” she added.
Innovative Ways to Mine Data
“Data are everywhere,” said Suzanne Bakken, RN, PhD, professor of nursing and biomedical informatics at Columbia University in New York City, who provided some examples of imaginative ways to collect and use data.
She described a project at her center in which the researchers used Twitter. The team mined tens of thousands of tweets to study attitudes from caregivers of people with dementia in the Latino community.
They looked at the content of the tweets, to whom the people were tweeting, and who responded to the tweets. They also did a “sentiment analysis” so they could discern the positivity and negativity of the tweets. The tweets complemented information gleaned from focus groups.
Nurses’ Concern Score
And Bakken was part of a team that developed a nurses’ concern score, after research showed that nurses increase documentation and monitoring as they become more worried about a patient (Am J Crit Care. 2013;22:306-313). The indications to increase documentation and monitoring are often subtle signs that can be seen before more obvious signs of distress are evident. But much of that extra documentation does not get to the people who could use the information to intervene in care.
The score is a good predictor of cardiac arrest, the team found, which has led to a multisite study to expand use of the score and create a decision-support system to go with it.
“As the nurse gets more concerned, decision-support algorithms will then identify various providers who should be more aware,” Bakken said.
“After 3 to 5 years of practice, there’s something that you can’t put your finger on, but you know when a patient is deteriorating,” said Grace Dean, PhD, RN, associate professor at University of Buffalo School of Nursing in New York.
“It’s not one thing,” she told Medscape Medical News. “Their color changes, they’re slow to respond, their vital signs are changing, and you’re on it.”
The speakers reinforced the “you can do this” message, she explained. “Data-powered health is relevant, and you’re the experts and part of the team.”
Increased competency will put data-powered health in motion, but that will take time.
“Younger people are more sophisticated with conceptualization of using data, so we’ve go to get more young people into the faculty role,” Dean noted.
Brennan, Bakken, and Dean have disclosed no relevant financial relationships.
Oncology Nursing Society (ONS) 2018 Annual Congress. Presented May 17, 2018.
Follow Medscape Nurses on Twitter @MedscapeNurses and Marcia Frellick @mfrellick
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