Pediatric family health history: a genetic screening and clinical decision support tool
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1 Pediatric family health history: a genetic screening and clinical decision support tool November 20, 2013 Implementation Webinar Natalie Mikat-Stevens, MPH American Academy of Pediatrics Emily Edelman, MS, CGC NCHPEG Brian Drohan, PhD Partners Healthcare 1
2 Acknowledgements & Disclosure Work presented was funded through HRSA cooperative agreements #U33MC12786 & UC7MC21713 The Pediatric Family Health History Tool is to be used by qualified healthcare providers for informational and educational purposes only and is not intended to replace or overrule the qualified healthcare provider s judgment or clinical diagnosis. 2
3 Objectives 1. Recognize the clinical conditions and clinical decision support in the new Pediatric Family History Tool 2. Explore the functionalities of the tool through a demonstration 3. Identify strategies, opportunities, and immediate next steps for implementation of the tool 3
4 The Pediatric Family History Tool Helps the busy primary care provider translated family history data for clinical care Engages the family as an active participant Provides a personalized clinical encounter with clinical decision support Adaptation of previously developed Pregnancy & Health Profile for prenatal providers 4
5 Implementation: Clinic Flow Pre-Encounter Clinical Encounter (1) Parent enters history (2) Electronic risk assessment (3) Clinician reviews report (4) Shared decision making (5) Clinician documentation Images attributed as follows: Doctor designed by Andrew McKinley, from The Noun Project. 5
6 Patient Care Benefits Saves time during provider encounter Yields more detailed data Instantly runs clinical decision support based on professional guidelines Electronically collects information 6
7 Conditions Aligned with current practice of collection Supported by practice guidelines and/or literature Actionable Complex Intellectual disability Mental Illness Cardiovascular disease Mendelian Hemoglobinopathies Cystic fibrosis Fragile X 7
8 Tool Demonstration Patient Questionnaire Provider Report Provider Interface 8
9 Patient Questionnaire 9
10 Provider Report 10
11 Provider Interface 11
12 Demonstration 12
13 Clinical Implementation: Site resources IT staff Server Wireless Clinical coordinator Computers and printer Physical space Project resources Resources IT support: develop local installation plan with site IT staff, technical assistance Clinical support: education and training, customized workflow, technical assistance 13
14 Clinical Implementation: Customized for site Current IT Solution Project staff works with site IT staff to install, fee for service SQL database on site server or hard drive Wireless connection to tablet, laptop, or desktop computer with patient interface software installed (pt. questionnaire) Patient-entered data is stored in database, not on computer Providers can have access to database through a clinician portal on desktop in office Wireless connection to office printer for automated printing of family history report Does not automatically interact with EHR at baseline 14
15 Implementation Checklist Onsite clinician & IT buy-in Tool installation & technical assistance Clinic flow & staff roles Training Launch Monitor 15
16 Implementation Checklist Onsite clinical & IT buy-in 1-4 months Present on tool and project to site leadership and key stakeholders Meetings to assess interest, feasibility, and commitment from site clinicians, IT, and administrators Identify the primary coordinator, clinicians, and other key participants May include needs assessment History/Pages/Family-History-Tool-for-Pediatric-Providers.aspx 3 16
17 Implementation Checklist Tool installation & technical assistance 3-6 weeks Needs assessment of existing resources, IT infrastructure, and clinic flow and processes Agreement with Hughes riskapps for support, if needed Meetings with stakeholders include IT staff and administrators to develop customized installation plan Installation, remote or in-person Test and provide technical assistance as needed 17
18 Implementation Checklist Clinic flow & staff roles 4-6 weeks Needs assessment of existing resources, IT infrastructure, and clinic flow and processes Meetings with site coordinator and lead to develop customized training, education, clinical support, and patient communication plans Plan for integration of tool into clinical workflow Plan for assessment and audit during implementation Training 1-2 weeks 18
19 Implementation Checklist Launch Monitor Check-in after 1-2 patients Regular intervals 19
20 Questions 20
21 Thank you! About the project History/Pages/Family-History-Tool-for-Pediatric-Providers.aspx Download the tool Contact us 21
22 Supplemental Slides List of conditions Patient Questionnaire Provider Interface Handouts Sample Patient Questionnaire Sample Provider Report 22
23 Condition Selection Criteria 1. Does the condition have a known genetic cause or contribution? 2. Is family history a good screening tool for the condition? A. Before assessing whether or not family history is a good screen, we collected available information about analytic validity, clinical utility, and recurrence risks of the family history condition. 3. Is an intervention available based on identification of increased risk? What is the intervention? 4. What is the public health impact of the condition? 23 Criteria adapted from Yoon et al., 2006
24 35 Conditions with Decision Complex Allergies Asthma Eczema Intellectual disability Autism spectrum disorder ADHD Depression Bipolar disorder Anxiety disorder Substance abuse Schizophrenia Suicide Congenital heart defect Congenital hip dislocation Support Congenital kidney disease Deafness Seizures Thyroid disease Celiac disease IBD or Crohn s Cancer Cardiovascular disease Stroke High cholesterol High blood pressure Diabetes Sudden death, SIDs Bleeding disorders 24 Mendelian Hemophilia Sickle cell disease Thalassemia Thrombophilia Von Willebrand disease CF Fragile X
25 play with pedigree, add disease, add/remove family members play with pedigree, add disease, add/remove family members Patient Questionnaire 25
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69 Staffing Emily Edelman Natalie Mikat-Stevens Jennie Vose, Michelle Esquivel Bruce Lin Siobhan Dolan Brian Drohan Kevin Hughes James O Leary Lisa Vasquez 69
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