MEDICAL HOME PORTAL1

Medical Home Portal: Guide to Selecting a Healthcare Provider

Maren Davis

Brigham Young University

Tina Huynh

University of Utah

StellaRestrepo

Salt Lake City, UT

Parent Representative:

Jennifer Banna

Missoula, MT

Faculty Mentor:

Judith Holt, Ph.D.

Utah State University

Medical Home Portal Coordinator:

Mindy Tueller

Abstract

The project aimed at enhancing the Medical Home Portal website by improving the resources available to families who have children with special health care needs through the development of a Guide to Selecting a Healthcare Provider. The Guide contains questions designed to assist families in eliciting general information on quality care and is based on the medical home model. According to the American Academy of Pediatrics, medical homes provide “accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective” care (Medical Home Initiatives for Children with Special Needs Project Advisory Committee, 2002). It is ultimately intended for the Guide to be placed on the Portal website. The objective of the Guide is to guide families in the process of finding a suitable provider according to their unique circumstances. The targeted domainsincludeprimary care, occupational therapy (OT), physical therapy (PT), and speech-language pathology (SLP). Families who have children with special health care needs often seek services from these types of providers. A brief description of the professional practiceand range of care by discipline is provided, as well asinsurance and general questionsthat apply to all healthcare providers. The Guide questions are based on research and subsequentsurveys, distributed to families, healthcare providers, and URLEND mentors. The aim is to provide helpful, reliable, and robust information.

Keywords: medical home, health care providers, children with special health care needs

Medical Home Portal: Guide to Selecting a Healthcare Provider

I.Introduction

A.Overview of Project

The purpose of the project was to enhance the resources for families in selecting healthcareprovidersavailable on the Medical Home Portal website, (

The Medical Home Portal is a web-based resource intended to provide valuable and relevant information about children with special healthcare needs to their families and healthcare teams who care for them. The Portal includes the following sections:

· For Parents and Families- Information on caring for children with chronic conditions, family adaptations, working with schools, transitions by age category and into adulthood

· For Physicians and other Professionals- How to implement the medical home model, information on screening, prevention and use of technology for children with disabilities

· Services and Resources- Information on community and professional services related to children’s health and family support; currently able to select complete services data from two states, limited services from eight states and full data sets for three states are in development

· Diagnoses and Conditions- Detailed information aimed at primary care clinicians on management of 42 chronic conditions, and ten more are in development

· Newborn Disorders- Information about 35 conditions screened for in most states to enable consistent and informed response to an abnormal newborn screening test

The Portal includes information about the care of chronic conditions in children, local services and other resources to augment care and help families. It is unique in the following aspects:

· Targeting both families and clinicians with comprehensive and accessible information for both audiences

· Focusing on chronic, and primarily uncommon, conditions in children

· Collating, and integrating into its content, information about community and professional services

· Supporting dissemination of local protocols and guidelines for caring for specific conditions

The task for our team wastocreate a Guide to Selecting a Healthcare Provider (the Guide)that could be understood, and used,by families in identifying healthcare providers that best meet their needs. The focus of the project and the Guideis on families: addressing the concerns of those who have a recently-diagnosed child to those whohave been using services for a while but who may be searching for new and / or additional healthcare providers.

B. Rationale for project

Frequently, families with children with special health care needs are advised to seek specific therapies and services for their children, accessing both medical and community-based resources. Medical diagnoses can cause families to experience anxiety, confusion, and uncertainty. The more information a family has, the more likely time and resources will be used efficiently and families will feel more comfortable accessing resources to meet their specific needs. Familiesmay have different levels of experience with the resources available to them and what exactly each provider can do for their child. The goal is that families will look to the Portal website as a reputable resource for accessing useful and credible information about different providers, regardless of their stage in the “search process.”More specifically, the goal is to help families find those providers that fit the medical home model, that is: those providers that are willing to work with other health care professionals to provide coordinated and comprehensive care that best meets the health care needs of the child and family. A “question bank” containing questions tailoredto each provider and their services will be available to help families start thinking about the characteristics of care that fits the medical home model. Not every question may be applicable or necessary for every family; however, having a list of questions to choose fromwill assist families in the process of finding a quality provider, having a foundation of information and qualities to build off of and begin their search process.

C.Project Aims

  1. What questions are useful to families in selecting a healthcare provider, including a primary care provider, OT, PT, and SLP?
  2. What types of questions are useful for families to ask all types of healthcare providers?
  3. What types of questions are useful for families to askinsurance providers?

II.Methodology

  1. Participants
  1. Project Participants

The project researchers include a team of four URLEND Program trainees. One trainee is a parent partner, providing the patient and family perspective. The other three trainees represent the disciplines of health administration, early childhood education, and speech-language pathology/special education. In addition, a Medical Home Portal representative, the Portal manager, is a participant. The survey participants include families, healthcare providers, and faculty mentors.

  1. Characteristics of Participants

The project parent partners and URLEND faculty mentors served as connections to families and health care professionals. Input from specific professionals from the four targeted fields (primary care, OT, PT, and SLP) was solicited.

  1. Selection Criteria for Participants

Parents and caregivers who have a child with special health care needs and healthcare professionals who provide services were involved. They were selected through URLEND family representatives and networks.

B.Measures or Evaluation Tools

The primary tool entailed the use of an online survey to refine the questions proposed for the Guide. (Please see Appendix A for survey questions.) The rationale for selecting these measures is that the goal is to obtain the expertise of families and providers on what questions are most important to them and appropriate to be asking. The surveys allowed for the validation of substantial data saturation. The saturation of specific responses from the surveydemonstrates relevance and importance in regards to the final Guide for the Portal website.

C.Procedures

The procedures of the project included the following steps:

1.Conducting a literature search and interviewing primary care, OT, PT, and SLP providers regarding the services they provide

2.Compiling a list of questions that families may want to ask potential healthcare providers regarding insurance, general office practices, and specific provider approaches to services / interventions.

3.Creating and disseminating an online pilot survey (through Surveymonkey) to solicit family input on which questions are most relevant to the family’s concerns and the critical issues they want to know concerning each type of provider

4. Collecting feedback from the initial pilot survey and revising the questions based on the survey results.

5.Surveying a larger number of families using the revised survey, as well as simultaneously obtaining feedback from healthcare providers on the questions that are most pertinent to their specific fields

6. Collecting and analyzing feedback from the families and providers to further refine the questions

7.Developing brief explanations to post on the Portal explaining why the questions would be useful for families to ask in order to help them understand the purpose of these questions)

8.Submitting each set of questions to the Portal committee for review, revision, and approval

D.Data Analysis Procedures

The data analysis procedures centered on evaluating the data from the surveys, and then refining the questions according to feedback. In particular, saturation level in survey data was closely evaluated. The reason to find this point of saturation among the participants (families, providers, faculty, etc.) was to ensure that most or all of the possible questions are meaningful and practical for the users of the Portal. According to recent research, “for studies with a high level of homogeneity among the population a sample of six interviews may [be] sufficient to enable development of meaningful themes and useful interpretations" (Mason, 2010). Hence, data saturation may take place at an early stage. The homogeneity within the families with special health care needs refers to the general range of issues and experiences related to the medical home model that families might encounter when seeking these particular healthcare services. Homogeneity also applies to other pediatric health care providers (OT, PT, and SLP).

III.Results

Summary

  1. Conducting a literature search and interviewing primary care, OT, PT, and SLP providers regarding the services they provide

The members of the team interviewed professionals in each area of study. They researched related professional associations for definitions, standards and professional best practices of each specialty: primary care (American Academy of Pediatrics), OT (American Occupational Therapy Association), PT (American Physical Therapy Association), and SLP (American Speech - Language- Hearing Association). Information from advocacy organizations was also used.

  1. Compiling a list of questions that families may want to ask potential healthcare providers regarding insurance, general office practices, and specific provider approaches to services / interventions.

After numerous meetings and discussions, the team compiled a list of questions that families may want to ask potential healthcare providers, especially with consideration to how the questions relate to the Medical Home Model.

  1. Creating and disseminating an online pilot survey (through Surveymonkey) to solicit family input on which questions are most relevant to the family’s concerns and the critical issues they want to know concerning each type of provider

We found that most of the questions had been rated as being somewhat valuable to very valuable, with minor suggestions for re-wording or providing clarification for some of the questions. The team and Medical Home Portal Manager met and designed an online pilot survey throughSurveymonkey. The survey assessed the “value” of each question, with rankingsfrom “Very Valuable” to “Not at all Valuable.” The survey also collected basic demographic information and allowed for open-ended input from participants. The team utilized different channels to distribute the pilot survey among families with children special health care needs. The parent partner and URLEND faculty members helped disseminate the survey among their networks.

  1. Collecting feedback from the initial pilot survey and revising the questions based on the survey results.

The initial pilot survey was open for 10 days. A total of 15 individuals from families with special healthcare needs participated.

  1. Surveying a larger number of families using the revised survey, as well as simultaneously obtaining feedback from healthcare providers on the questions that are most pertinent to their specific fields

Based on this initial feedback, we decided to send out the survey in its current state to more families, using URLEND networks and contacts among the current faculty and trainees. The link for families was open for almost two weeks and by the end, we had a total of 30 completed surveys. During this time we also sent out condensed surveys to Primary Care Providers (PCP), SLPs, OTs, and PTs within the network of URLEND faculty, trainees and their colleagues. These surveys only had the questions from the family survey that focused on the specific area of expertise of each specific provider. We had nineOT, tenPT, sevenPCP, and sevenSLP provider responses.

  1. Collecting and analyzing feedback from the families and providers to further refine the questions

The surveys for families were refined and sent to a larger number of families through the same channels of the pilot survey, in addition to families through team member connections. Approximately 15 more individuals participated. In addition, a separate survey for each targeted specialty was created. A minimum of five professionals from each targeted healthcare field participated, including URLEND faculty and previous URLEND trainees.

  1. Developing brief explanations to post on the Portal explaining why the questions would be useful for families to ask in order to help them understand the purpose of these questions)

Due to time restraints, this step was not completed. However, it can be a future direction for the Portal or URLEND leadership project.

  1. Submitting each set of questions to the Portal committee for review, revision, and approval

The questions were given to the Portal manager. The Portal committee plans to place the Guide questions on the Portal website.

Figure 1. Family responses from the 30 completed family surveys.

Figure 2. Family responses from the 30 completed family surveys. 1= Not at all valuable, 2= Not very valuable, 3= Somewhat valuable, 4= Very Valuable.

Figure 3. Family responses from the 30 completed family surveys. 1= Not at all valuable, 2= Not very valuable, 3= Somewhat valuable, 4= Very Valuable.

Figure 4. Family responses from the 30 completed family surveys. 1= Not at all valuable, 2= Not very valuable, 3= Somewhat valuable, 4= Very Valuable.

Figure 5. Family responses from the 30 completed family surveys. 1= Not at all valuable, 2= Not very valuable, 3= Somewhat valuable, 4= Very Valuable.

Figure 6. Family responses from the 30 completed family surveys. 1= Not at all valuable, 2= Not very valuable, 3= Somewhat valuable, 4= Very Valuable.

Table 1

Family responses for which providers they were seeing for their child with special health care needs. The numbers in the table are the totals from 30 completed family surveys.

Number of Families Seeing These Different Service Providersfor the Care of Their Child with Special Health Care Needs
HeaHealthcare Needs
Neurologist/Neuro-Surgeon / 13
Gastroenterologist / 6
Optometrist / 3
Physiatrist / 2
Orthotist / 2
Pulmonologist / 2
Audiologist / 4
ENT / 6
Occupational therapist / 15
Physical therapist / 16
Speech-Language therapist / 18
Geneticist / 1
Orthopedics/ Orthopedic Surgeon / 8
Cardiologist / 3
Nephrologist / 1
Psychiatrist / 2
Child development specialist / 1
Vision specialist / 1
Sign-language interpreter / 1
Plastic Surgeon / 1
Behaviorist / 2
Hippotherapy Provider / 3
None / 1

IV. Discussion

  1. Discussion of findings in relation to project aim

We determined from the 30 completed family surveys that the questions for the different providers and insurance companies were found to be mostly valuable by those that took the survey. We received several comments throughout the process of the project that the questions were making them think of additional questions that they hadn’t thought of on their own.We met our project aim of determining the value of different kinds of questions for families with children with special health care needs.

  1. Implications of findings, including limitations

The information from the surveys is being passed on to the Medical Home Portal team to implement on their website, creating a menu of questions from the Guide to choose from. This will help families who either have options in their area or can be selective based on their insurance coverage. However, it can also benefit those families that only have one provider option, to know what qualities and characteristics they want to be pursuing and advocating for. For example, it may help them decide if it is worth driving further to see another provider that better fits their needs.

Throughout the process we had some interesting responses that further justified the value and purpose for completing this project, as it showed that there was confusion among different individuals about what is involved in selecting a quality provider.

Some of the limitations we had during our project included not having enough time to translate the surveys to reach the Hispanic-community, having a small number of families complete the survey, and simply the nature of the survey: asking questions about questions for multiple providers that led to a long survey to complete.