Patients' Views About Patient Engagement and Representation in Healthcare Governance.

EXECUTIVE SUMMARY: Health systems increasingly engage with patient representatives on their governance boards or with patient and family advisory councils to improve care delivery. Little is known about how general patients regard those engagement activities. The objective of this study was to assess the importance of patient representation. We mailed a survey to 31,687 Medicare beneficiaries attributed to a Medicare accountable care organization. We examined relationships between respondents' views and their health characteristics and performed thematic analysis on free-text responses. Among 3,061 respondents, the majority believed that having a patient representative (74.1%) or a patient council (74.0%) mattered "some" or "a lot." The main factors respondents considered in answering were that "patients deserve a voice" (64%) and "having a patient on the [governance] board increases my trust" in this organization (46%). Our analysis of free-text responses illuminated why patient representatives are important, keys to successful engagement, and reasons behind the skepticism. This study indicates that most patients believe representation in health system governance is important, and that realizing its potential requires engagement activities that improve general patients' awareness of, and interaction with, their representatives.

Bringing central line-associated bloodstream infection prevention home: catheter maintenance practices and beliefs of pediatric oncology patients and families.

BACKGROUND: A study was conducted to investigate (1) the extent to which best-practice central line maintenance practices were employed in the homes of pediatric oncology patients and by whom, (2) caregiver beliefs about central line care and central line-associated blood stream infection (CLABSI) risk, (3) barriers to optimal central line care by families, and (4) educational experiences and preferences regarding central line care. METHODS: Researchers administered a survey to patients and families in a tertiary care pediatric oncology clinic that engaged in rigorous ambulatory and inpatient CLABSI prevention efforts. RESULTS: Of 110 invited patients and caregivers, 105 participated (95% response rate) in the survey (March-May 2012). Of the 50 respondents reporting that they or another caregiver change central line dressings, 48% changed a dressing whenever it was soiled as per protocol (many who did not change dressings per protocol also never personally changed dressings); 67% reported the oncology clinic primarily cares for their child's central line, while 29% reported that an adult caregiver or the patient primarily cares for the central line. Eight patients performed their own line care "always" or "most of the time." Some 13% of respondents believed that it was "slightly likely" or "not at all likely" that their child will get an infection if caregivers do not perform line care practices perfectly every time. Dressing change practices were the most difficult to comply with at home. Some 18% of respondents wished they learned more about line care, and 12% received contradictory training. Respondents cited a variety of preferences regarding line care teaching, although the majority looked to clinic nurses for modeling line care. CONCLUSIONS: Interventions aimed at reducing ambulatory CLABSIs should target appropriate educational experiences for adult caregivers and patients and identify ways to improve compliance with best-practice care.

Strategic Review Process for an Accountable Care Organization and Emerging Accountable Care Best Practices.

Accountable Care Organizations (ACOs), like other care entities, must be strategic about which initiatives they support in the quest for higher value. This article reviews the current strategic planning process for the Johns Hopkins Medicine Alliance for Patients (JMAP), a Medicare Shared Savings Program Track 1 ACO. It reviews the 3 focus areas for the 2017 strategic review process - (1) optimizing care coordination for complex, at-risk patients, (2) post-acute care, and (3) specialty care integration - reviewing cost savings and quality improvement opportunities, associated best practices from the literature, and opportunities to leverage and advance existing ACO and health system efforts in each area. It then reviews the ultimate selection of priorities for the coming year and early thoughts on implementation. After the robust review process, key stakeholders voted to select interventions targeted at care coordination, post-acute care, and specialty integration including Part B drug and imaging costs. The interventions selected incorporate a mixture of enhancing current ACO initiatives, working collaboratively and synergistically on other health system initiatives, and taking on new projects deemed targeted, cost-effective, and manageable in scope. The annual strategic review has been an essential and iterative process based on performance data and informed by the collective experience of other organizations. The process allows for an evidence-based strategic plan for the ACO in pursuit of the best care for patients.