In partnership with the Center to Advance Palliative Care, the Solomon Center introduced a GPS tool to track palliative care legislation across the country.
Lukas Flippo, photo editor
The Solomon Center for Health Law and Policy at Yale and the Center to Advance Palliative Care, or CAPC, have developed a new tool that will facilitate research and advocacy in palliative care.
Palliative care is specialized medical care for people with serious illnesses that focuses on improving the quality of life and reducing suffering. The Hospice Palliative Care Policy GPS created by the Solomon Center and CAPC compiles information on bills and laws related to hospice care in a range of categories, from clinical skills building to public awareness of payment. It allows users to search for legislation by year, invoice status, and geographic location. According to Eugene Rusyn LAW ’17, editor-in-chief of GPS, this database is a unique new tool in the field of palliative care policy.
“Over the past 10 years, there has been a lot of policy development across the country when it comes to palliative care,” Rusyn told The News. “[But] it was very difficult to know what is going on, just because no one was really following in the same place in a regularly updated way what the states were doing.
Stacie Sinclair, CAPC associate director for healthcare and policy transformation and a member of the GPS leadership team, explained that people often confuse palliative care with palliative care, which is for people with terminal illnesses. While palliative care is a type of palliative care, palliative care also encompasses the care of people with any serious illness and is often provided in tandem with curative care.
The Policy GPS research team included students from Yale Law School, Yale School of Public Health, and Sacred Heart University School of Social Work. According to Stephanie Rice LAW ’23, she and the other student researchers used the LexisNexis legal database to search each state for legislation that contained certain keywords such as “palliative” or “long-term care,” and then sorted the results. to find the bills that should be included in the GPS. The database covers bills at every stage of the legislative process and all 50 states, as well as the territories of the United States, Indian Health Service, and Veterans Affairs.
“The reason we want to follow not only bills that become laws, but also bills that are in progress or have failed, is because often times what ends up happening in the decision-making space is that a really innovative idea can be introduced in one place, and fail there, and then be picked up elsewhere and succeed, ”said Rusyn. “And if we don’t follow the bills that don’t quite cross the finish line, we could lose some of these really important and innovative policy ideas.”
In addition to legal research, the GPS work had an important design component. Rusyn said the goal was to make the database accessible to patients and their families who might not have a detailed understanding of the legislative process. They drew inspiration from other organizations that regularly build state-by-state policy monitoring tools, in particular the National Conference of State Legislative Assemblies.
The team hopes that GPS will be useful to future researchers interested in palliative care. Before the creation of the GPS, there was no centralized database on palliative care policy, meaning researchers had to collect data in each state before conducting larger analyzes, according to Dena Schulman-Green. , Associate Professor at NYU Rory Meyers College of Nursing and a member of the Hospice Palliative Care GPS team.
Rice said the research team has already identified potential research topics that they can use the database to study, including how states are funding palliative care and how the opioid epidemic has impacted palliative care policy.
“Just knowing that your dataset is in one place, that it’s up to date and clean is of great value to researchers,” said Schulman-Green. “If it’s not there… and you have to start putting the database together first and then analyze it, we often don’t have the time or the capacity to incorporate that into what we’re for. funded. You are often expected to have done these steps in advance.
The database is also a tool for decision makers and policy advocates. Sinclair said GPS will help advocates see what others have come up with or adopted instead of having to invent entirely new ideas. She noted that states regularly draw inspiration from other states that have already faced the “growing pains” of innovative politics.
This version of the database is just the start, its creators said. According to Rusyn, the team plans to expand the database to include legislation dating back to 2010. The tool currently only dates from 2017 at the earliest. They also want to incorporate federal policy, not just statewide legislation, and cover regulations, not just laws. To do this, they plan to partially automate their search process.
The GPS came out at a time when palliative care was receiving renewed attention due to the pandemic.
“I think the value of hospice care has really come to the fore in a way that it hasn’t been before,” Sinclair said. “The patients were very, very sick. There wasn’t a lot of information. It was incredibly scary; their families were not allowed to see them. … In many cases, it was the palliative care teams that formed the bridge between the hospitalized person and the families at home.
Between 2000 and 2019, the percentage of hospitals with 50 or more beds that had a palliative care program rose from 25 to 82%, according to the GPS website.