Medical Home Portal URLEND Leadership Group

Amanda Dye, SPTCherissa Alldredge, Disability StudiesBrian Banks, DMDJennifer Goldman-Luthy, MD, MRPJade Tinker, Genetic CounselingMedical Home Portal URLEND Leadership Group

Project OverviewPURPOSE: Develop Frequently Asked Questions (FAQs) for medical reference website: www.medicalhomeportal.orgPROCEDURES: weekly meetings and Dropbox, research, permissions, CHALLENGES: content and proceduralPRODUCT: Before and After FAQs

Purpose: Set of FAQs for each diagnostic condition, Various users (families, patients, physicians, and related service providers), Initially developed through CHIPRA grant and faculty at University of Utah

Procedures: Weekly team conference calls and meeting notes, Divided 27 topics among group, Researched existing FAQs online, Solicited permission to utilize FAQs, Identified gaps in existing FAQs, Submitted compiled FAQs to Portal leadership

Challenges: -Content: Multiple medical conditions (27), some quite rare, FAQs from family and physician perspectives, Permission from other websites, Consolidating diverse sets of FAQs-Procedural: Group coordination (meeting times, products), Creating uniform end product during restructuring of Portal site, Work with existing Portal leadership team

2

Before:Product: Before: A Frequently Asked Questions page in the Diagnosis Module with: limited information for parents, no consistency/structure, not necessarily written for families, and no additional links or resources.

3

After: Product - After: Diagnosis-specific page for families: Located in the For Parents & Families section for higher visibility, Written specifically for families, 8 consistent common questions & answersAdditional links, resources, and diagnosis-specific FAQs, Links to the full diagnosis module 4Future Medical Home Portal DirectionsEnhance physician/provider sections of Portal Care process modulesFAQsIncrease number of conditions Streamline user pages Keep updated Secure funding after CHIPRA grant ends

Now for TEAM TIME

englishsweetshop.wordpress.comJade TinkerCherissa AlldredgeBrian BanksAmanda DyeJennifer Goldman-Luthy

Jade notes

Cherissa - Thoughts about leadership project . . .Increased appreciation for technology, Importance of connections, Thoughts about URLEND in general . . . Projects I did/enjoyed - Legislative involvement Challenges I faced -Initial lack of familiarity with CYSHCN, MCHB, etc., Accessibility, Significant shift in personal ideologies Learning highlights -Everyone has something to contribute, learn Goal for Future: Research on improved employment outcomes, supports for individuals and families with special health-care needs

Brian notes

Amanda notes

Jennifer - Focus on education and medicine interface, Increased referral basis, Genetics talk, Hawaii LEND exchange, Goal for future: Improve care coordination

6

Special AcknowledgmentsMindy Tueller, Medical Home Portal Program ManagerGina Pola-Money, Medical Home Portal/Family FacultyLaura Oppermann, Family Faculty

The Portal is very grateful for the time, effort and insight of the URLEND leadership group. This acknowledgement will appear on each of their Family Diagnosis pages.Mindy - Participated in weekly phone meetingsLinked between Portal leadership team (which includes Gina Pola-Money) and our groupInterface between on-line organizations, survey feedback, and medical students

Gina actively involved on both the family end and the MHP end she does it all

Laura also gave input from family perspective (through Cherissa)

Portal team appreciated our work too

7Suggestions for Future URLENDModule on medications in autism and DD (or provide as an archived webinar?)Module on alternative therapies used in kidsClarify role of family trainees in groupsClarify 100/100/100 hours versus flexible 300Increase relationship-building/networking time among traineesTrainee mentor (e.g., previous trainee) to guide new traineesMore lead time on assignments

Questions?

beamalifeinsurance.com