News and Opportunities

Check here for the latest news in measure development as well as the most recent patient-centered research from CMS, the National Institutes of Health (NIH) and the Department of Health and Human Services (HHS). Learn about the latest projects and open calls from our measure developers. Listen to our monthly podcast and subscribe to our newsletter to become an expert on quality measures. We have everything to keep you informed of what is happening in measure development.

Listen to our Podcast

The Journey from Patient to Patient Advocate

Kevin Wake is a PFEN member and current chairman for University Health’s Patient & Family Advisory Committee. He is the President of the Uriel E. Owens Sickle Cell Disease Association of the Midwest in Kansas City, KS. He has dedicated himself to encouraging patient engagement and empowerment in the healthcare system. In this episode, Kevin shares his journey from patient to advocate with host Desiree Bradley. He also explains how to provide a welcoming environment where patients and providers can come together collaboratively to drive change in your healthcare ecosystem.

Patient-Centered Research and News

CMS and PFEN advocate for research that improves health and healthcare research that is patient-driven and focused. Each month, we highlight recent research from all over the world that utilizes patient, family, and provider perspectives, experiences, and engagement to improve health outcomes for diverse communities of all genders, sexualities, geographies, races, ethnicities, and languages.

Psychosocial Impact of the War in Ukraine on Pediatric Cancer Patients and Their Families Receiving Oncological Care Outside Their Country at the Onset of Hostilities

Advances in Radiation Oncology

Psychosocial care of pediatric cancer patients and their families is as critical as the medical and surgical components of their therapies. Strains on family communication and structure and financial need are linked to poorer psychological outcomes for both patients and families. It is critical that children remain as connected as possible to their communities and extended families during therapy. For Ukrainian pediatric cancer patients receiving care outside of their nation’s borders on February 24, 2022, the Russian invasion of Ukraine compounded these problems. Based on conversations with patients and parents, Gamze Uğurluer et al. evaluated the psychosocial impact of war on pediatric Ukrainian cancer patients and their families who had left their country before the onset of the conflict to undergo treatment of pediatric malignancies at our medical center. These families shared with researchers the problems they have experienced after the Russian invasion of Ukraine. Their concerns can be summarized in 4 categories: (1) emotional stress experienced by the patients, families and relatives related to the dangers of war; (2) difficulties in obtaining previous hospital records in Ukraine; (3) medical expenses; and (4) uncertainty regarding the patient’s and their family’s future and the ability of the children to ever return to their homes. Psychosocial distress relating to the violence of war will hopefully pass in near future, but pediatric patients and their families will continue to face stressors related to displacement and financial concerns for some time to come.

Using Conversation Analysis to Show How Practitioners Support Patients to Describe Pain

Patient Education and Counseling

Assessing pain intensity is an important palliative care task. Self-report pain intensity scales are frequently used within assessment. In contrast to formal studies of validity and reliability, this study examined administration of, and responses to these scales in everyday palliative care. Dr. Laura Jenkins et al. searched episodes of pain scale use in a dataset of video/audio-recorded UK palliative care consultations involving five doctors, 37 terminally ill patients and their caregivers. They found five and applied the techniques and tools of conversation analysis to characterize the scales’ administration and functioning. The patients responded to the scales by reporting multiple aspects of pain; the doctors supported and encouraged this. In two episodes, the scales generated misunderstandings. The doctors worked to resolve these in ways that avoided implying the patient was at fault. Pain intensity scales can yield richer information than just intensity. They can also mitigate social friction which take skill and effort to resolve. To preserve the therapeutic relationship, professionals should work to resolve these to strengthen their relationship with the patient.

Patients’ Experiences of Patient-Controlled Sedation: An Interview Study of Patients who Underwent Endoscopy

Journal of PeriAnesthesia Nursing

Patient-controlled sedation (PCS) allows patients to self-administer sedative drugs during endoscopic retrograde cholangiopancreatography (ERCP), a procedure used to diagnose certain digestive and pancreatic diseases. There is not much research on the experiences of patients who have used PCS. Dr. Marcus Eknemar et al. designed their study with the purpose of describing the perioperative experiences of patients who used PCS during ERCP. Persson et al. conducted sixteen semi-structured interviews with patients at a university hospital in Sweden who used PCS. Their analysis of the interviews revealed that patients who experienced PCS during ERCP explicitly appreciated participating in their own care during the procedure, primarily in thanks to the support of medical staff. For some of the patients, PCS was preferred over other previously experienced sedation methods. In conclusion, patients’ sedation management experiences through PCS were influenced by the establishment of a relationship with the procedure team.