| Literature DB >> 35860315 |
Alexandra H Vinson1, Michael Seid2,3,4, Breck Gamel5, Shehzad Saeed6, Brandy Fureman7, Susan C Cronin2, Katherine Bates8, David Hartley3,4.
Abstract
Objective: To establish a basis for a domain ontology - a formal, explicit specification of a shared conceptualization - of collaborative learning healthcare systems (CLHSs) in order to facilitate measurement, explanation, and improvement.Entities:
Keywords: collaborative learning health system; learning networks; ontology
Year: 2022 PMID: 35860315 PMCID: PMC9284927 DOI: 10.1002/lrh2.10306
Source DB: PubMed Journal: Learn Health Syst ISSN: 2379-6146
Proposed ontology of Collaborative Learning Health Systems
| Grammar | Vocabulary | |
|---|---|---|
| Goal | What the network is trying to accomplish | The vocabulary of _goal_ may include terms for clinical health, QI/research, psycho‐social health, engagement |
| Value | The network's rules of engagement | The vocabulary of _value_ may include terms for inclusivity, equality, coproduction, partnership |
| Structure | The network organization and relations | The vocabulary of _structure_ may include terms for leadership, relation to healthcare environment, maturity, repository for data/digital assets (commons), hardware, how the network is funded |
| Actor | Who/what is participating in network activity | The vocabulary of _actor_ may include terms for people, animals, and other entities and objects that participate in the construction of relations within a network: patients, parents, advocates, healthcare providers, social workers, committees, panels, working groups |
| Environment | Context that the network and sites are imbedded in | The vocabulary of _environment_ may include terms for the institutional, natural, cultural, or socio‐political environment that shape the possibilities for constructing relations within a network: hospital, practice, university, company, external forces, policy, funding |
| Product | Tangible outputs of the network | The vocabulary of _product_ may include terms for information/WINWIN, research data, innovations, network narrative (incl origin story), procedures |
Values elicited during expert panel discussion, duplicates represented in parentheses to show consonances
| Values | ||
|---|---|---|
| Co‐production | Shared learning (2) | Improving life with those with CF |
| Growth | Data‐based | Using QI skills |
| People‐centered | People first | Innovation |
| Equality in coproduction | Generosity (2) | Achieving more together than alone |
| Laugh and have fun while we work | We collaborate: spirit of QI | Empathy (2) |
| Failure is the way we learn (2) | Contribution | Equity (3) |
| Shared purpose | Collaboration | Embrace uncertainty |
| Transparency (3) | All teach, all learn (3) | Co‐production with families |
| Lack of respect for the status quo | Share seamlessly and steal shamelessly | Respect for all colleagues and all ideas |
| Learning from data | Respect for all | Focus on outcomes (2) |
| Relentless focus on outcomes | Distributed leadership | Who's at the table |
| Patients and families are the center of our work | We are a circle, not a hierarchy: we coproduce with our patients and families | |
Ontology mapping exercise
| Goal | Value | Structure | Actor | Environment | Product | |
|---|---|---|---|---|---|---|
| [Network Name] |
Note: Operational definitions:
Goal = what the network is trying to accomplish
Value = the network's rules of engagement
Structure = the network organization and relations
Actor = who/what is participating in network activity – includes inanimate objects
Environment = context that the network and sites are imbedded in
Product = tangible outputs of the network
Instructions: Please fill in the table to describe attributes of your network. You can use lists, short phrases, keywords, etc.
Reflection: Please take 5 min and write a paragraph about what it was like for you to fill this out.
Mapping exercise for Cystic Fibrosis Learning Network
| Cystic Fibrosis Learning Network | |
|---|---|
| Goal | Improve health outcomes, improve co‐production, partner with Cystic Fibrosis Foundation (CFF) to innovate, co‐production of care, co‐production of quality improvement ‐ shared purpose, intrinsic motivation or build will. |
| Value | Partnership, transparency, data‐driven testing/quality improvement, quality improvement (QI) skills, equity of patient and family members, time pressure, leaders help others to lead. |
| Structure | Individual QI teams at CFF sites/institutions, with embedded patient/family partner (PFP) on each team, with a focus of a triad (physician lead, QI lead, PFP lead); partnership with CFF. Network Leadership Team + workgroups, mentorship, snowflake model. Model for Improvement. Work is funded by CFF. Workgroups. IRB approval is already established (existing part of structure). iLabs. Strong support from operations team and Quality Improvement Consultants. |
| Actor | Clinicians, patient & family partners (PFPs), CFF, experts and advisors, patients and families who are not PFPs, registry team, institution as entity with person‐like qualities (especially for grants and permissions), members of other networks (as we learn at LNCC or through the literature and websites, we have borrowed heavily from other networks, eg, by looking at change packages). |
| Environment | Institutions (care centers, etc.), honoraria and grants, COVID, time, trikafta, competing interests for time and thinking. CFLN teams are also members of Therapeutics Development Network, Success with Therapies Research Consortium, and Transplant Consortium. |
| Product | Change packages, experienced leaders, engaged PFPs, publications, reliable clinical processes, innovations, rapid learning, build a culture of passion and curiosity, that is, culture of improvement. |
Mapping Exercise for ImproveCareNow
| ImproveCareNow | |
|---|---|
| Goal |
1. Transforming the health, care and costs for all children and adolescents with inflammatory bowel disease (IBD) by building a sustainable collaborative chronic care network. 2. Enable/empower patients, families, clinicians and researchers to work together in a learning health care system to accelerate innovation, discovery and the application of new knowledge. 3. Achieve financial sustainability. 4. Focus on health inequity, increase diversity and bridge the gap on disparities. 5. Integrated technology platform. 6. Continued focus on community engagement and patient centered outcomes. |
| Value | Inclusivity, honesty, transparency, community, empowerment, learning, continuous improvement. |
| Structure |
1. Board of Directors. 2. Executive Directors. 3. ICN Staff. 4. Anderson Center for Health System Excellence Staff. 5. Community Council (represents community stakeholders with representation from each stakeholder group as listed in 6‐17). 6. Physician Leadership Group (represents physician leads from selected sites). 7. Research Committee (reviews research proposals). 8. Parent Working Group (comprised of participating parents). 9. Patient Advisory Council (comprised of patients who are focused in developing patient facing tools as well as representing a patient perspective at various community fora). 10. Clinician Committee (comprised of physicians who determine and develop clinical and Qi focus for the network). 11. Data Management Committee (comprised of clinicians, parents, and patients and determine data‐ process, QI and outcomes measures‐, tracking and reporting of these measures to the network). 12. Social Workers and Psychologist Working Group (focused on developing content and projects on mental health for the network participants). 13. Dieticians Work group. 14. Coordinator Work Group‐comprising of ICN/Anderson Center staff working with center coordinators for data related issues and updates. 15. Nurses Work Group. 16. Engagement Group (Stakeholders representative focused on improving community engagement and awareness work). 17. Regulatory Group (ICN and Anderson Center staff focused on regulatory [eg, IRB] focused deliverables). 18. Diversity, Equity and Inclusion Committee(Network wide committee reporting up to the Board developing and focusing on DEI efforts for outcomes, leadership, and staffing). |
| Actor |
1. ICN executive leadership and staff. 2. Contracted Staff including Cincinnati Children's Hospital Medical Center and others. 3. Community stakeholders‐ physician leads, coordinators, dieticians, psychologists, nurses, parents and patients. 4. Researchers including clinicians and health outcomes researchers. 5. Industry partners. 6. Foundations. 7. Federal funding agencies (Agency for Healthcare Research & Quality, Patient‐Centered Outcomes Research Institute). |
| Environment | Technology infrastructure support provided by biomedical informatics. Now pivoting to platform provided by HIVE Networks for Registry, Collaboration, Social Interaction, File Sharing. |
| Product |
1.Publications. 2.Tools‐These include patient developed and patient facing tools, Self Management Handbook, Visit planners, Growing up with IBD, Ostomy Toolkit, Shared decision making tool kit for surgery etc. 3. Information sharing tools like the every other week newsletter‐DIGEST, LOOP Blog, CIRCLE newsletter for patients and families, etc. 4. Quality Improvement educational modules. 5. Continuing Medical Education and Maintenance of Certification credit for clinicians. 6. Data and Population Management capabilities. |
Mapping exercise for T1D Exchange QI Collaborative (T1DX‐QI)
| T1D Exchange QI Collaborative (T1DX‐QI) | |
|---|---|
| Goal | Improve clinical and patient reported outcomes for people living with Type 1 diabetes. |
| Value |
1. All learn and all share shamelessly. 2. Every benefit when everyone participates. 3. Give credit when due. 4. Our work is about improving lives so we co‐produce with patients. 5. Nobody should be left behind; we must intentionally embed health equity in our processes and outcomes. |
| Structure |
1. Network was established in 2016. 2. The Coordinating center is the T1D Exchange, a Boston based non‐profit. 3. The network is funded by Helmsley Charitable Trust, a NY based philanthropic organization. 4. The Coordinating center has improvement coaches that meet with the team individually bi‐monthly for benchmarking and improvement advice. 5. The Coordinating center hosts a bi‐monthly collaborative call with Adult and Pediatric centers separately. 6. There are joint learning sessions in the spring and fall. |
| Actor |
1. 41 Participating (28 pediatric and 13 adult) Endocrinology centers across the US. 2. Each center has between 3‐10 active team members including Endocrinologists, Patient Representative, QI Coordinators, IT Rep, Nurses, Admin etc. 3. The Coordinating center staff including the Principal Investigators, data engineers, IT support staff, QI Coaches, data analyst and administrators. 4. Six committees including Patient/Parent Advisors, Publications, Data Governance, Data Science, Clinical Leadership. |
| Environment |
1. The centers are across 19 states in the US. 2. There are centers in urban and rural regions. 3. There centers are all affiliated with academic institutions. 4. The centers include both small centers (less than 500 patients), medium (501 to 1000 patients) and large centers (over 1000 patients). 5. The centers capacity and baseline culture for improvement varies widely. |
| Product |
1. Quality Improvement Portal – this is an electronic medical record online tool for center‐to‐center benchmarking, quality improvement case studies, centers can also generate detailed improvement reports, ranking, customizable control and run charts. 2. Largest US Real world Comprehensive database for 40 000+ patients with Type 1 diabetes. 3. 25 Peer‐review publications in high impact journals. 4. 60 Conference presentations at major international conferences. 5. Four change packages. 6. Demonstrated improvement in major processes and clinical outcomes including glycemic management. |
Mapping exercise for Out of Hospital Cardiac Arrest Learning Community
| Out of Hospital Cardiac Arrest (OHCA) Learning Community | |
|---|---|
| Goal |
Overarching goal: improve survival rates for victims of out‐of‐hospital cardiac arrest across Washtenaw and Livingston counties Sub goals: 1. Lower time to first treatment response rates. 2. Raise community awareness on sudden cardiac arrest. 3. Increase availability and access to public automated external defibrillators (AEDs). |
| Value | We want to engage all stakeholders (experts, grassroots, advocates, etc) who are involved in the chain of survival of any out of hospital sudden cardiac arrest victim. |
| Structure | Governed by a joint leadership structure of UM Department of Learning Health Sciences (operational arm of the Learning Community), Emergency Department and the Washtenaw‐Livingston Medical Control Authority. |
| Actor |
Principal participant organizations and individuals: Emergency room cardiology and cardiac rehabilitative care clinicians from Michigan Medicine and Saint Joseph Mercy Health System, 911 dispatch and first responder agencies, Washtenaw‐Livingston Medical Control Authority, SaveMiHeart, county/city/township fire departments, police agencies, sudden cardiac arrest survivors, community leaders. |
| Environment | Academic institutions, medical systems, law enforcement and public safety agencies, non‐profit and community organizations, regulatory agencies. |
| Product |
Website: Advertising the ongoing work of the community: Flyer: One‐pager: |