Initial Working DRAFT for Stakeholder Input and Refinement
See here for Work in Progress toward this tool set.
Problem to be Solved (Current State)
Care plans are defined inconsistently. Different tools are called 'care plans', e.g., tools specific to different settings, conditions, etc. And these tools and the data they contain aren't interoperable with each other and often don't fit seamlessly into and support care and patient life workflows.
Care plans are often narrowly focused, uncoordinated and inadequately inclusive. There isn't typically a comprehensive care plan that cuts across conditions, settings, and providers to enable coordinated, whole-person care (See first 1 minute 8 seconds of 'Mae' patient scenario.) To the extent that care plans do exist, they often are focused on the role of a specific team member, discipline or health concern (e.g., nursing care plan, pharmacy care plan, advanced care plans/ directives). They are typically not made available to everyone who has a stake in the person's care (the entire care team).
The current clinical workflow in most settings does not support care planning activities. Most care-related activities happen during patient and provider encounters which creates a bottleneck impeding progress toward patient health goals.
Care plans do not often incorporate patient-centered data.
- Current care plans often lack data that are important to patients and necessary to address patients needs, including social determinants of health (SDoH; e.g., food insecurity, housing instability, material hardship, social connection/isolation), patient-important outcomes (e.g., quality of life, ability to work), and other contextual data.
- This is due in part to limited/inadequate data architecture, structure, and standards for patient-reported and patient-centered information and incomplete understanding of the data elements that matter most to people living with chronic conditions.
- Data isn’t comprehensive often does not contain (or makes it difficult to find) user- and context-sensitive data needed - in combination with pertinent evidence and guidance - to optimize decisions, actions and outcomes (i.e., achieve the quintuple aim).
- Data elements for SDoH are in particularly in need of more robust data standards. In incorporating such data standards, it will be critical to bring about practice changes to do so that respect privacy, confidentiality, cognitive load on care team and patient, and loads the burden appropriately (e.g. does not dump data entry burden inappropriately on patient, treating clinician, or other care team members.)
Health data are not interoperable and key data are not documented. Currently, care plan-related data is siloed, often must be entered in multiple places, and isn't readily accessible to all who need it (e.g., Patients, clinicians, Caregivers). Expected results of care delivery, and progress toward achieving those results aren't systematically documented in a standardized fashion in an actionable/processable manner (e.g., are in free text in progress notes and thus not easy to find an act upon). This keeps this needed information from driving the learning health system cycle (see here for more information).
We lack infrastructure, standards, and evidence to combine knowledge and data to support decisions. We lack knowledge (e.g., evidence, guidance, CDS) interoperability. We often to not effectively implement CDS and produce burden and alert fatigue rather than making workflows more efficient. We also lack evidence on which to base clinical guidance for people with multiple chronic conditions, who have historically been excluded from clinical trials.
The current culture and regulatory environment are not well suited to drive the behaviors necessary to build, maintain, and use a platform for addressing the problems outlined above. It will be necessary to advance and standardize the culture and regulatory environment to drive these activities. For example, to ensure that data elements essential to address quality, cost and access to care - in a manner concordant with the quintuple aim - are captured and leveraged appropriately. Once technically capable and usable (efficient) CSCP's are demonstrated through pilot use, cultural and regulatory environmental changes likely will be necessary as they have been in the past (e.g., to drive recording of BMI, smoking status, an up-to-date problem and medication list, and to provide the patient with an after-visit summary)for widespread adoption and value.
What the Solution Looks Like (Future State)
Comprehensive Shared Care Plans (CSCP) provide a centerpiece for care transformation by enabling the entire healthcare team (patients, clinicians, care givers, community service providers, paid and unpaid caregivers, and others with a vested interest in the patient's health) to access all of the patient data (e.g., health goals, clinical history, medications, social determinants of health, concerns, etc) needed to make decisions that support the patient's health and healthcare goals. These tools also help connect the care team to pertinent evidence and guidance needed to achieve these goals.
In the Future Vision, Comprehensive Shared Care Plans (CSCP) are created in electronic format and used by and shared (with consent) across the entire health care team to make care more coordinated and effective.
CSCPs are comprehensive (including clinical, social and contextual data) and support 'patient priorities care’ and 'whole person care' by documenting and leveraging across authorized providers and settings all the pertinent information including the patient's goals, priorities, needs, circumstances, conditions, interventions and preferences.
Comprehensive Shared Care Plan Definition from US Department of Health and Human Services 2015 stakeholder panel:
- Gives the person direct access to their health data
- Puts the person’s goals at the center of decision-making
- Is holistic, including clinical and nonclinical data (e.g., home- and community-based, social determinants needs and services)
- Follows the person through both high-need episodes (e.g., acute illness) and periods of health improvement and maintenance
- Allows care team coordination. Care team members able to 1) view information relevant to their role, 2) identify which team member is doing what, and 3) update other members of an interdisciplinary team
See here for Work in Progress toward this tool set.
See also other slides from Stephen Chu, HL7 Patient Care WG
What the Solution Looks Like (Future State)
Overview of 5-year Destination
- See from 1 minute 9 seconds to 1 minute 55 seconds in 'Mae' patient scenario
Communication: Data Exchange with Unambiguous Definitions
- Data are accessible in real time at any time by anyone with authorized access
- Data are interoperable across different systems and organizations
- Supports collaborative care plan development and implementation by the entire care team (including the patient, all clinicians, and caregivers)
- Supports a care model that increases preventive services and provides problem-based support within and outside of traditional office encounters (including telehealth, conversational AI, and services beyond legacy clinical services to include the spectrum of SDoH services such as food security, transportation, etc.)
- Care plans reflect a shared-decision making process that is driven by all the patient's health and social data (gathered automatically), and informed by all pertinent evidence for the patient's health issues (e.g., preventive care and for managing common and important acute and chronic clinical issues) as well as the person's individual health and social needs, goals, preferences and priorities.
- Reconciles the combined set of problem-focused care plans into a unified/integrated care plan that provides a coherent and feasible evidence-informed set of actions and, ultimately, has development and implementation enhanced by AI and machine learning (ML) approaches and tools
- Evolves the patient’s care plan as circumstances change based on input from the patient and the care team, data from information systems, and updated evidence and recommendations (which are automatically delivered to care plan templates and patient-specific care plans)
- Coordinates user input and activities across the care team (i.e., patient, caregiver, primary care providers, specialists, facilities, and organizations
- Supports the common situation where patients have multiple chronic conditions
- Provide knowledge at the right time for the right issue in a user-friendly way, e.g., via patient and provider-focused knowledge resources and CDS interventions linked to the CSCP, and tools to support shared decision making driven by CSCP data.
Tool Users/Use Cases
- Patient engagement in care planning as part of daily life activities
- Shared decision making between patients and their primary care team
- Shared care planning with specialty care teams, especially for patients with Multiple Chronic Conditions (MCC)
Infrastructure needed to produce tools/solve problem
- Standards must be developed and implemented to support interoperable exchange of health data across diverse settings and support interplay with corresponding standardized evidence and guidance related to the patient data. Standards are particularly limited in supporting exchange of person-centered and person-important data, such as social determinants of health, health goals, priorities and preferences, and patient-important outcomes (e.g., quality of life).
- Vendor EHR systems must expand their support for APIs (e.g., SMART on FHIR), and standards (e.g., FHIR Goals resource) that support care planning with measurable outcomes and rich care plan intervention details.
- Improved data sharing across the healthcare team (patients, clinicians, caregivers, community service providers, etc) using FHIR standards, e.g. via Health Information Exchanges (HIEs) that include multiple EHR vendor systems.
- Integration of community service providers (e.g., pharmacists, social service providers) into health IT systems. Most don't have access to HIEs.
image above from Stephen Chu, HL7 Patient Care WG (from these slides)
Other enablers needed to solve problem
- Policy and funding to incentivize improved care processes and outcomes of the sort that is enabled by CSCPs
- Training and change management to support use of these tools by patients, caregivers, and clinician
- Cultural change to get care teams (including patients) comfortable with leveraging CSCP-related information (e.g., for patient-directed care planning) outside of healthcare visits
- Research to determine what kinds of users need what kinds of CSCP-related data and knowledge, so this information can be surfaced more easily in these tools
- Improved evidence base for managing multiple chronic conditions on which to build knowledge standards