There’s Strength in Numbers for People Facing Serious Illness

To improve the quality of life for people with serious illness and their families, Dartmouth Institute researchers are developing a model of care which utilizes the unique knowledge of patients, families, and clinicians 

Many of us are familiar with the African proverb it takes a village to raise a child. But, there is an increasing awareness that it also takes a network of people working together to care for and support people facing serious illness and their families. Researchers at The Dartmouth Institute are developing a Palliative Care Learning Health System Incubator (LHS-Incubator) that unites the distinct knowledge and experiences of patients, caregivers, and clinicians—enabling these groups to work together to design and develop novel services and tools to improve palliative care experiences. The innovative care model also has the potential to help achieve higher healthcare value and increase our knowledge of the science of palliative care delivery. The Palliative Care LHS-Incubator is being developed in coordination with the creation of a national Palliative Care Quality Collaborative (PCQC), led by the American Academy of Hospice and Palliative Medicine. Learn more about key aims of Dartmouth’s work below.

Aim 1: Co-design tools, including a point-of-care dashboard and a community support network, that can enhance communication among patients, their families, and clinicians, thereby, increasing the likelihood that people living with serious illness will receive care that reflects their values and meets their needs and goals.

Like the instrument panel on a car, a point-of-care dashboard provides a centralized visual display of key indicators of well-being. It may display information from patients and families, such as symptoms, mood, and pain level, alongside information from their clinicians, such as lab values, test results, and prescribed treatments.

Community support networks use a variety of media including newsletters, online discussion boards, blogs, and social network sites to gather and distribute health information and self-care knowledge. They can help patients and caregivers access accurate, vetted information about treatments and services. Support networks also reduce social isolation and loneliness, increase disease awareness, support better self-management and learning, support advocacy movements, and accelerate research.  

Aim 2: Support the Palliative Care Quality Collaborative (PCQC) in co-designing and testing innovative tools that are driven by registry data.

A registry is a collection of information about individuals—their diagnoses, their health outcomes and their treatments—which is usually focused around a specific diagnosis or condition. Patients and clinicians provide information about themselves to these registries on a voluntary basis. The PCQC will bring together three existing national palliative care registries that are being used for quality improvement and research into a single registry. The Dartmouth Institute team is “incubating” ideas for ways the “front end” of the registry might work, such as how can it be used to influence patient-clinician relationships and improve health outcomes.

“Our collaboration increases the likelihood of spread and scale of our work and gives us access to the best minds in palliative medicine, many of whom are leaders of the Palliative Care Quality Collaborative,” says Dartmouth Institute Professor Amber Barnato, MD, MPH.

Aim 3: Support innovation across palliative care service through proof-of-concept demonstrations for people with serious illness in the Dartmouth-Hitchcock (DH) palliative care program as well as the adaptation and testing of these ideas in partnership with one DH serious illness service line, such as the heart failure program, and two palliative care centers that become part of the PCQC. 

“We are particularly interested in the impact of the incubator on patient and family experiences, including how they work together with their care team,” says principal investigator and Dartmouth Institute Professor Eugene Nelson, DSc, MPH. “Working with Dartmouth-Hitchcock and care centers in the Palliative Care Quality Collaborative is critical to assessing the success of the model.” 
 

POSTED 2/22/2019 AT 04:26 PM IN #research