Data collection comes to palliative care

Late to the game, it figues out the rules

Palliative care was only recognized as a specialty five years ago by the American College of Graduate Medical Education. Because of its newness, those working in the specialty are still learning how to effectively collect data and make use of the information once they have collected it. Even once they have decided that data collection is a good idea — and not all of those who work in the specialty are there yet — they often rely on measurements and tools that seem sensible, but lack evidence that they are appropriate.1

Amy Abernethy, MD, associate professor of medicine and director of the Duke Cancer Care Research Program in Durham, NC, has worked on figuring out what data are of value in palliative care. In an article published in Current Oncology Reports,2 she and her peers looked at what data are collected and how they can affect "quality, value, and research within a palliative care organization." Without data, she notes, the specialty can't demonstrate its value and won't survive.

Several problems have to be addressed, she says. First, most of what is commonly collected in palliative care is from medical documentation, which Abernethy notes "isn't discreet and can't help you do the kind of predictive modeling you need to affect care. Plus, this is a distressing time, and data collection can be repulsive to both patient and family. I think, too, that those who go into palliative care aren't into data collection as much as they are into caring for their patients. They are just not number wonks."

While palliative care and hospice are good at using patient and family satisfaction tools to see how they are doing, says Abernethy, the environment is what she calls "data naïve." There are attempts by many organizations to improve the situation. Specifically noted in Abernethy's paper is the Center to Advance Palliative Care (see Resource, below, for more information), which has a variety of tools and articles available. Among the types of data to collect, Abernethy and her coauthors name process data — such as patient demographics, where care is delivered, and referral sources — and outcomes data that quantify the impact of care delivered on patients and their families.

Once you figure out what to collect, you have to determine the best way to collect it. "This is a poorly reimbursed and time-intensive specialty," Abernethy says. "You have to make people more likely to participate." Putting more data collection at the point of care and making the collection systems more streamlined and easier to use could encourage more providers to engage in data collection. "We can use electronic pens, iPads, or other tablets, and find ways to run algorithms in the background so that if you put in some incorrect data, you can be prompted quickly to correct it so that you don't have to go back to the patient or family and repeat something."

Abernethy has one leg up on others: There is a consortium of palliative care organizations in North Carolina that have agreed upon what data to collect and how to expand on that if desired. "If someone wants to do a study on difficulty swallowing, they can add something to the electronic form we have already created. They don't have to create a complete new form," she says. The state now has a single large data pool, too, that can help the individual organizations monitor their quality and outcomes compared to their peers.

There undoubtedly will be more pressure on palliative care to prove its worth using data as time goes on. Meanwhile, Abernethy says that the data they collect can be used to improve care for patients and also to market palliative care services. "They can say they think about evidence-based practice," she says.


  1. Hanson LC, Scheunemann LP, Zimmerman S, et al. The PEACE project review of clinical instruments for hospice and palliative care. J Palliat Med 2010; 13:1,253-1,260.
  2. Kamal AH, Currow DC, Ritchie C, et al. The value of data collection within a palliative care program. Curr Oncol Rep 2011; 13:308-315.


For more information on this topic, contact:

  • Amy P. Abernethy, MD, Associate Professor of Medicine, Division of Medical Oncology, Department of Medicine, Duke University School of Medicine, Director, Duke Cancer Care Research Program. Durham, NC. E-mail:

  • Web: Center to Advance Palliative Care: