This announcement solicits applications for the Strategic Approaches to Improving Access to Quality Health Care for Children and Youth with Epilepsy Program. The purpose of this program is to facilitate the delivery of quality health care for children and youth with epilepsy (CYE) by: 1) implementing evidence-based and innovative models of telehealth[1] and/or telemedicine[2] (including mobile health or mhealth[3]) using health information technologies[4]; 2) implementing the Got Transition Six Core Elements Framework[5] to help youth successfully transition[6] from the pediatric to adult system of health care; and (3) facilitating outreach and education regarding epilepsy among pertinent stakeholders.
The goal of this initiative is to utilize quality improvement methods and measure outcomes to improve access to coordinated and comprehensive quality care for CYE, with an emphasis on populations experiencing health disparities[7] and CYE residing in underserved and/or rural communities.[8] [9] A minimum of 20 percent of the target population to be served through this funding opportunity must include populations experiencing health disparities7 and must be medically underserved. The target population can be within a state or a broad geographic region. Each applicant’s project must reach a minimum of 1,000 CYE. All awardees will be responsible for convening quality improvement learning collaboratives focused on implementing technology and addressing youth transition by implementing the Got Transition Six Core Elements Framework. These collaboratives should test and implement effective strategies to improve access to specialty care and the quality of care received by the target population. Awardees will be expected to partner with CYE and their families, hospitals, federally qualified health centers, primary care physician’s offices, rural health clinics, community health centers, specialty centers, epilepsy support and advocacy groups, and/or state provider organizations (e.g., American Academy of Pediatrics, American Academy of Family Physicians, National Association of Pediatric Nurse Practitioners, and Primary Care Organizations, state Title V Children with Special Health Care Needs and Medicaid/CHIP agencies.)
A learning collaborative consists of a series of learning opportunities aimed at building accountable capacity for team-based testing and transformation.[10] Collaborative improvement networks use standardized quality improvement methods to translate evidence into practice, and support teams to test and implement changes in a reliable, sequenced way.[11] As an example that applicants may follow, the graphic below is an example of a learning collaborative framework from the Institute for Healthcare Improvement.
Each awardee will be expected to recruit a minimum of seven clinical sites (e.g., hospitals, primary care practices, federally qualified health centers, rural health clinics, and community health centers) to participate in learning collaboratives focused on technology and youth transition. Specifically, the awardee will coordinate and facilitate structured activities that will support the patient/family-centered medical home[12] for CYE and the value of incorporating technologies and youth transition infrastructure within the clinical sites. The clinical sites will be responsible for the following: 1) participating in the learning collaboratives; and
2) implementing telehealth and/or telemedicine (including mobile health, or mhealth) and youth transition activities using quality improvement methods.
Awardees will be expected to share the progress of the learning collaboratives monthly through conference telephone calls with the Epilepsy Coordinating Center (ECC) and the MCHB Project Officer. Additionally, awardees must convene a quality improvement leadership team (a physician, program coordinator, and a CYE or/and a family member of a CYE must be included on the team) that will have the responsibility of planning, implementing, and facilitating the learning collaboratives’ activities, which will include at a minimum one in-person session for the clinical sites.
Other responsibilities of the awardees include the following:
Provide guidance to the clinical sites regarding quality improvement methods.
Provide evidence-based guidance[13] to learning collaborative participants on the implementation and use of health information technology. Ensure learning collaborative participants have information on current pediatric epilepsy clinical guidelines and best practices, e.g., Got Transition Six Core Elements Framework, patient/family-centered medical home.
Implement and update an evaluation plan annually. The plan should address: the extent to which the program-specific objectives have been met; evaluation of the project’s goals and objectives; effectiveness of strategies implemented to address barriers/challenges; and data collection/monitoring/reporting pertaining to all project strategies.
Create a change package[14] describing best practices for implementing telehealth/telemedicine/mhealth and youth transition.
Include components of family engagement activities. Family engagement activities should be on a continuum when appropriate. The levels of engagement can be in direct care, organizational design and/or governance and policy making. The continuum of engagement can be in consultation, involvement and/or partnership and shared leadership. Each applicant should incorporate the appropriate family engagement activity that supports the chosen strategy.
Clinical sites participating in learning collaboratives will be responsible for conducting the following activities:
Participate in an epilepsy quality improvement learning collaborative on telehealth, telemedicine, and/or mobile health and pediatric to adult transition.
Implement telehealth, telemedicine and/or mhealth technologies within the health care delivery system (e.g., hospitals, primary care practices federally qualified health centers, rural health clinics, or/and community health centers) to assist in providing access to quality epilepsy care for CYE, particularly those experiencing health disparities and residing in rural and/or underserved communities.
Implement and maintain an epilepsy pediatric to adult transition model based upon the Got Transition Six Core Elements Framework.
All awardees must report on the following program-specific objectives:
Outcome Objectives:
By August 2019, increase by 25 percent the number of CYE in the target population who receive care through a patient/family-centered medical home. Baseline data will be collected in the first quarter of year two.
By August 2019, increase by 50 percent the number of CYE served by the clinical sites who have a youth transition plan in place (20 percent of this number will be from populations experiencing health disparities and/or CYE residing in medically underserved and/or rural areas). Baseline data will be collected in the first quarter of year two.
By August 2019, increase by 25 percent the number of CYE in the target population who are from populations experiencing health disparities and/or residing in medically underserved and/or rural areas that have access to specialized epilepsy care (i.e., at a minimum having a seizure action plan in place for CYE; providing comprehensive epilepsy education for CYE and their caregivers). Baseline data will be collected in the first quarter of year two.
By August 2019, increase by 25 percent the number of CYE in the target population reporting use of comprehensive and coordinated treatment and care plans. Baseline data will be collected in the first quarter of year two.
Process Objectives:
By August 2019, increase by 25 percent the proportion of CYE served by the clinical sites receiving coordinated and comprehensive health care through telemedicine visits. Baseline data will be collected in the first quarter of year two.
By August 2019 increase by 20 percent the number of CYE in the target population who are from populations experiencing health disparities and/or residing in medically underserved and/or rural areas receiving coordinated and comprehensive health care through telemedicine visits. Baseline data will be collected in the first quarter of year two.
By August 2019, all participating clinical sites in the learning collaboratives must have a pediatric to adult epilepsy transition infrastructure in place using the Got Transition Six Core Elements Framework. Baseline data will be collected in the first quarter of year two.
By August 2019, increase by 50 percent the number of clinical sites with a plan in place to use telehealth, telemedicine and/or mhealth to coordinate care for CYE from populations experiencing health disparities and/or CYE residing in underserved and/or rural areas. Baseline data will be collected in the first quarter of year two.
[1] The Health Resources and Services Administration (HRSA) defines telehealth as the use of electronic information and telecommunications technologies to support long-distance clinical health care, patient and professional health-related education, public health, and health administration.
[2] According to the American Telemedicine Association, telemedicine is the use of medical information exchanged from one site to another via electronic communications to improve a patient’s clinical health status. Telemedicine includes a growing variety of applications and services using two-way video, email, smart phones, wireless tools and other forms of telecommunications technology. (http://www.americantelemed.org/about-telemedicine/what-is-telemedicine#.VsrcU_7VzIU )
[3] According to the Foundation for the National Institutes of Health (FNIH), mHealth is the delivery of healthcare services via mobile communication devices. (http://www.himss.org/ResourceLibrary/GenResourceDetail.aspx?ItemNumber=20221)
[4] Health Information Technology (HIT) can be defined as the use of certified Electronic Health Records technology in a meaningful manner; ensuring that the certified EHR technology is connected in a manner, that provides for the electronic exchange of health information to improve the quality of care. Centers for Disease Control and Prevention. (http://www.cdc.gov/ehrmeaningfuluse/introduction.html).
[5] http://www.gottransition.org/providers/index.cfm
[6] www.gottransition.org .
[7] HRSA defines health disparities as the differences in length and quality of life, and rates and severity of disease and disability because of social position, race, ethnicity, gender, sexual orientation, education, or other factors. (http://www.hrsa.gov/publichealth/ )
[8]The medically underserved population can be defined as a population with one or more of these attributes:
a. A part of a Health Professional Shortage Area (HPSA); it may be a whole county or group of county or group of contiguous counties, a group of civil divisions or a group of urban census tracts to which residents have a shortage of primary care clinicians and/or mental health professionals; and
b. An area that includes groups of persons who face economic, cultural or linguistic barriers to health care. (http://www.hrsa.gov/shortage/ )
[9] The Agency for Healthcare Research Quality defines coordinated care as care that is coordinated across all elements of the broader healthcare system whereas comprehensive care is defined as patients having the large majority their physical and mental health needs met. (https://pcmh.ahrq.gov/ )
[10] The Harvard Medical School Academic Innovations Collaborative: Transforming Primary Care Practice and Education: Bitton, Asaf MD, MPH; Ellner, Andrew MD, MSc, et al.
[11] Clancy CM, Margolis PA, Miller M. Collaborative networks for both improvement and research. Pediatrics. 2013;131 (suppl 4): S210–S214
[12] As defined by the American College of Physicians, the Patient Centered Medical Home is a care delivery model whereby patient treatment is coordinated through their primary care physician to ensure they receive the necessary care when and where they need it, in a manner they can understand (https://www.acponline.org/node/293847).
[13] http://www.americantelemed.org/resources/telemedicine-practice-guidelines/telemedicine-practice-guidelines/practice-guidelines-for-live-on-demand-primary-and-urgent-care#
[14] A change package is an evidence-based set of changes that are critical to the improvement of an identified care process. www.improvingchroniccare.org .
