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Advisory Council July 2019 Meeting Presentation: Reflections

Monday, July 29, 2019

Printer Friendly Version in PDF Format (7 PDF pages)

 

Reflections

Laura Gitlin

Advising role -- Opportunities and Limitations

  • We operate within a space between opportunities and limitations imposed by legislative rules/regulations guiding activities
    • Understanding this space is particularly challenging for new members
  • Within this space, the Advisory Council serves a very critical role and has achieved significant progress
  • Four Key Goals for 2 year Chair appointment
    • Enhance engagement of all members and more responsibility of subcommittee chairs/members
    • Link recommendations/activities to five goals/strategies/actions of Plan
    • Identify ways to be more impactful
    • Examine ways to systematically evaluate accomplishments and identify future directions

Primary accomplishments per goal

  • Goal: Enhance engagement of all members and more responsibility of subcommittee chairs/members
    • Subcommittee chairs plan one meeting a year on a topic relevant to their respective NAPA Goals and recommendations
  • Goal: Link recommendations/activities to five goals/strategies/actions of Plan
    • Presentations and federal report outs tied to goals/strategies
  • Goal: Identify ways to be more impactful
    • Executive summary of recommendations as talking points for nonfederal members to use to engage with state and federal legislators
    • Elevation of NAPA goals (esp. #2,3, 4) with the First National Resaerch Summit on Care and Services
    • that will now be sustained as part of the NIA infrastructure for research milestone development
    • Understanding of dementia across trajectory from prevention to end of life, as complex, requiring multi-sector, multidimensional, coordinated actions
  • Goal: Examine ways to systematically evaluate accomplishments and identify future directions
    • Driver Diagram
    • Indicators of progress (how do we know we are moving forward; how will we know when goals are accomplished)
    • Moonshot and 4-D approach

Recommendations moving forward

  • Expand reach of Advisory Council meetings:
    • Increase social media presence and concerted outreach to the public to tune in
    • Sponsor meetings/pre-conferences at major meetings (AAIC, GSA etc)
  • Chairs/subcommittee chairs - Formulate clear goals for what to accomplish; clearly link meetings/speakers to evolving recommendations
  • Prepare for 2025:
    • Evaluate what has been accomplished
    • Evaluate what needs to be accomplished
    • Provide strong rationale for continuing Advisory Council

Key Area Needing Immediate Attention

  • Advance an infrastructure for treatment delivery
  • Projected capacity insufficient to handle expected case load for treatments
  • Key constraint - limited capacity of dementia specialists for diagnosis, limited access to infusion centers to deliver treatment
  • Addressing capacity constraints needs to involve payment policy, regulatory requirements, workforce considerations, and capacity planning at national and local levels as well as ground awareness; development of quality indicators etc
Screen shot of Assessing the Preparedness of the U.S. Health Care System Infrastructure for an Alzheimer's Treatment.
https://www.rand.org/pubs/research_reports/RR2272.html

Pragmatic Trials offers the science to help advance an infrastructure

  • We have some evidence
    • It often does not fit health systems
    • Takes time, effort and frustration to fit
    • In fitting, we may damage the peg

What is the MoonShot to improve Quality of Life Now?

  • Ideas grounded in evidence that are:
    • Ambitious, but not unattainable
    • Can make a real difference
    • Possible to accomplish in next few years.
    • May change, influence recommendations, legislation, policy, practice, research
    • Multi-sectorial (not one action)
    • Focus on dementia care to improve quality of life

Moonshot has to be multi-sectorial and coordinated

  • Improve Quality of Life
    • Quality indicators
    • Ground awareness
    • Workforce prep
    • Reimbursements for evidence-based programs
    • Measurement of progress

The 4 Disciplines of Execution (4DX)" to Achieve our "Wildly Important Goal"

  • Discipline 1: Focus on the Wildly Important
    • Define crucial goals and narrow the team's focus to those goals.
  • Discipline 2: Act on Lead Measures
    • Consistently carry out and track results on those high-leverage activities that will lead to the achievement of WIGs.
  • Discipline 3: Keep a Compelling Scoreboard
    • Visibly track key success measures on a goal.
  • Discipline 4: Create a Cadence of Accountability
    • Regularly and frequently plan and report on activities intended to move the measures on the WIG scoreboard.

Act on Lead Measures

  • Lag Measure: the historical measure of a goal or WIG achievement expressed in terms of from X to Y by when
    • Ex: Increase annual water production from 175 million liters to 185 million liters by end of year
  • Lead Measure: the measure of an action planned and taken as a means to achieving a WIG
    • Predictive: if the lead measure changes, the lag measure will also change
    • Influence-able by the team
    • Ex: Increase the percentage of shifts with full crews from 80 to 95 percent.

Example of a Wildly Important Goal

  • By 2025, increase by 25% the average length of time after diagnosis that a person with dementia can remain a community-dwelling adult
    • Lag measures
      • Reduced number of admissions to LTC
      • Reduction of caregiver burden
    • Lead measures
      • Increase of support services
      • Increased caregiver education

Questions/Issues

  • How do we measure preferred environment"
  • How to we ask people with advanced dementia (in nursing homes, potentially) if they are in their preferred environment
  • Preferred environment may change with disease trajectory and how to account for?.
  • How to assure caregivers have training and resources they need to manage behavioral symptoms and other clinical symptoms?
  • How to account for time of diagnosis and time of LTC -- what administrative data sets are available?
  • Is LTC defined as facility-based placement (MDS data source for non-SNF stays; doable), use of long-term home-based services (data source?) or both?
  • Is there a way to build in goals of care discussion (which is a Medicare service with a billing code -- ACP) into this?
  • Consider as a lead measure % of people with a diagnosis of dementia who have a care plan.
    • What is current % - i.e. baseline?

What drives placement to long term care?

Balls in a funnel toward Long Term Care. The balls represent what needs access to evidence-based programs: Behavioral changes (care resistance, safety); Rising caregiver burden (physical toll, burnout); Worsening confusion (functional decline, safety).

What is the impact of a transition to long term care?

  • Positive aspects
    • Expanded team for caregiving/reduced burden on family caregiver
    • Increased social interactions for the person with dementia
  • Negative aspects
    • Loss of familiar environment/homesickness/confusion during transition
    • Reduced person-centered care
    • Major financial burden

Reflections from Non-federal Members Leaving the Advisory Council