Emerging Investigator Learning Resources


Curriculum content and links will be posted here. 

General Curriculum Topics

Principles and Approaches to Partnering: A guide to working with youth and family leaders as Co-PIs

THEME

TOPIC SUB-TOPICS

LEARNING MODULE LINKS

CYSHCNet National Research Agenda CYSHCNet National Research Agenda 1.      Overview of the Agenda  
The CYSHCN Context: Policy and Funding Definitions of CYSHCN 1.      CYSHCN, CMC and children with disabilities (often important in policy-making; SSI functional criteria as eligibility standard) Discussion of overlap and differences feels important  
2.      Classification tools and their use  
3.      Data sources for different categories of children  
4.      Consider how special health care needs is defined through a cultural lens  
5.      What constitutes health and well-being?  
6.      Beliefs about treatments, interventions, therapies, developmental outcomes, transition, independence vs. interdependence, informed consent, how religiosity and spirituality impacts decisions about care etc.  
7.      How the concepts of intersectionality and multiple cultural identities manifest in children and youth with disabilities from specific racial, ethnic, and cultural groups. (Required) Cultural Competency Module
Funding streams for CYSHCN research? 1.      Funding mechanisms, including HRSA portfolio of grant funding, of course – but also foundation funding, PCORI, NICHD, NIMHD, etc.  
(PAYMENT MODEL) Education on funding streams/barriers for CYSHCN/ 1.      Safety net funding  
2.      Mandated movement into Managed Care  
3.      “medical poverty” Family out of pocket expenses in new funding models  
4.      Medicaid: block grants, Waivers  
5.      Value-based purchasing and value-based insurance design – pros and cons re: access and quality  
(PAYMENT MODEL) Impact of Medicaid Payment models on outcomes of care 1.      Managed care, fee for service, accountable care models  
2.      Access to services in these models: for CMC, CYSHCN  
3.      Quality of care coordination  
4.      Insurance / Medicaid Waivers  
Funding streams for CYSHCN research? 1.      Funding mechanisms, including HRSA portfolio of grant funding, of course – but also foundation funding, PCORI, NICHD, NIMHD, etc
Family-Centered Research: background, approach, and engagement History on Research on Disabilities 1.      Role of Federal agencies: NICHD, MCHB , NIMH, AHRQ CDC, CMMS in agenda setting and funding
2.      Role of State and Federal Title V CSHCN
3.      Nothing about us without us
CBPR with CYSHCN 1.      Who are the partners
2.      How to engage the partners
3.      How to involve partner input in the development of a research question/agenda/direction
4.      Larger “electronic Medical Neighborhood”—online community (see Improve Care Now)
5.      The active engagement of culturally and linguistically diverse families and youth in all phases of research (e.g. design, sampling, instrumentation, data collection and analysis, and dissemination).
Engaging Family & CYSHCN in Research Projects (why it is important)
1.      Partnering, finding a good fit

2.      Involving family in research design

3.      Assuring diverse family input: racial, ethnic, nationality, language, etc.

4.      Engaging caregivers, family and non-family

Family Youth Stakeholder Partnership and Engagement Module
5.      Engaging persons with intellectual/developmental disabilities
6.      Engaging clinicians
7.      Engaging multiple non-clinician care team members, including care coordinators and navigators (including community health liaisons and family navigators), and nonclinical community services
Special Considerations with CYSHCN Research 1.      Consent/assent
2.      Data to policy linkages: how to shorten/narrow the gap?
3.      Quality measures (or lack thereof) to drive research and influence national agenda
4.      Need for diverse inputs, assoc costs
5.      Consideration for the population of children and youth with special health care needs across the U.S., its territories, and tribal nations/communities.
Youth, Family and Stakeholder Partnerships How to engage families and youth in research partnerships 1.      A checklist/how to guide to engaging family leaders in the research process Checklist_Family Voices
Paradigms of Care Models 1.      Medical home, etc.
2.      Chronic Care Model
3.      Patient Family Centered Care Model
4.      Care coordination and integration
5.      Planned care encounters: care pre- and post-face to face encounters
Other considerations 1.      Accessing specialty services
2.      Healthcare Transitions (adolescents, young adults)
3.      Self-management strategies
4.      Implementation of topics above into clinical care –what works and can be made reliable, sustainable, spreadable?
Community 1.      IEPs/Educational Accommodations
2.      Role of schools in provision of care, care coordination, and transition
3.      Accessing community based services
4.      Coordination of services
Forming a Research Question Pre-research 1.      Lit review
2.      How to write a research question
3.      Project planning
Sampling 1.      Sampling frame,
2.      Randomization,
3.      Stratified, convenience, cluster, snowball, etc.
4.      Inclusion/exclusion criteria
5.      Population
Qualitative and Mixed-Methods Research

 

Qualitative Methods 1.      Qualitative research and mixed methods: types of qual methods
2.      Developing logic models
Qualitative Analysis 1.      Coding programs: Atlas.ti, NVIVO, Dedoose – when are they useful & when not
2.      Coding: thematic, etc.
3.      Data saturation
Primary Data Collection 1.      Survey
2.      Innovative methods like photo voice
3.      Focus groups vs. interviews
4.      Interview guides
5.      Initial needs assessments
Mixed Methods Research 1.      Design Types: Sequential Explanatory, Sequential Exploratory, Concurrent
2.      Mixed methods v multi methods
3.      When to mix data strands
4.      How to communicate MM study results
Data Sets/Secondary Data 1.      Admin data
2.      Big data: What is it? How is it used?
3.      Publicly available data sets: what is available, how to access  (e.g. national survey data, cshcndata.org)
4.      EHR  & EHR data
5.      Natural language processing
6.      retrospective data queries
7.      Consent and issues related to data storing and redcap for PHI when using the EHR
HSR Stats/Methods Primers 1.      Propensity scores
2.      Pragmatic Trials including stepped wedge
3.      QI research techniques: interrupted time series, etc.
4.      Dissemination/Implementation Research
Dissemination Choosing a Publication 1.      Impact of publication, fit, impact factors
2.      scientific writing and publishing
3.      Working with your research team, guideline for authors; determining author order upfront
4.      Disseminating research findings in collaboration with youth and families and in venues and formats that are accessible (e.g.  shared authorship, plain language, joint presentations at meetings/conferences)