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Genetics in Primary Care Institute - Quality Improvement Project (GPCI-QIP)

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Genetics in Primary Care Institute Quality Improvement Project (GPCI-QIP)

The Genetics in Primary Care Institute Quality Improvement Project (GPCI-QIP) provided physicians and their staffs with strategies, tools, and resources necessary to improve the provision of genetic services in primary care. Clinical teams implemented tools, strategies and measures designed to improve the assessment and identification of genetic conditions for all patients, as part of the health supervision visit, and improve the care and management of patients with defined genetic conditions. Teams also worked to improve systems that track children with genetic conditions in order to ensure appropriate follow up, communication, and care coordination take place.

Acknowledgement of Funding
The GPCI was a three-year cooperative agreement between the AAP and the Health Resources and Services Administration Maternal and Child Health Bureau (federal award number UC7MC21713). The GPCI was established with an overarching vision to improve primary care provider knowledge and skills in providing genetics-based services. A major goal of this initiative is to increase understanding amongst the public and medical home providers regarding how genetics and family history influence the health of the individual.

A Toolkit to Improve Care for Pediatric Patients with Genetic Conditions in Primary Care

A Toolkit to Improve Care for Pediatric Patients with Genetic COnditions in Primary Care Book CoverTake a look at the extensive toolkit, "A Toolkit to Improve Care for Pediatric Patients with Genetic Conditions in Primary Care" to access practice improvement strategies, tools and resources that apply to integrating genetics and taking a meaningful family history into primary care. The toolkit is the result of an extensive change package evaluation by the 13 teams involved in the GPCI-QIP. It was reviewed by primary care physicians and is intended to be accessible to physicians, nurses and allied health professionals in the primary care setting.  It includes practical tools, resources and templates for integrating genetics into the primary care work flow and particularly the health supervision visit.

Project Goals

The goals of the QIP were to improve the assessment and identification of genetic conditions for all patients age 0-21 years, as part of the health supervision visit (through the collection of a family history), and to improve the care and management of patients age 0-21 years with known genetic conditions.

Project Aims

The specific aims of the project included:

  1. Improving the assessment and identification of genetic conditions for all patients aged 0-21 years old, as part of the health supervision visit. Specific goals included:
    • Family histories were created or updated/maintained at health supervision visits, using the family history components defined by the project, for 90% of patients
    • Current family histories were discussed with 90% of patients/families
    • 90% of patients with a positive family history and/or identified clinical concerns of a genetic condition have documentation in the chart that a follow-up/plan of care was discussed with the patient/family
    • 90% of practices plan for and accommodate patient's special needs at office visits
    • 90% of practices have a system for reminding/recalling patents due/overdue for preventive services
    • 90% of practices have a referral tracking mechanism
    • 90% of practices have a process/written protocol for use of a standardized family history tool
  2. Improving the care and management of patients aged 0-21 years with defined genetic conditions. Teams will specifically work to improve the percent of patients with identified genetic conditions with:
    • Documented health supervision guidelines followed (90%)
    • Up-to-date health supervision visits (90%)
    • Documented next steps and follow-up as appropriate (90%)
    • Documented current emergency plans (if applicable) (90%)
    • Documented genetic services offered at least initially (90%)
    • Documented transition of care to adult providers discussed at least annually (patients age 12-21) (90%)
    • Documented palliative care discussion offered at least annually (if applicable) (90%)

 And, at the practice-level, the project worked to improve the percent of practices with

    • A system to identify, follow, and provide care management (100%)
    • A system to obtain emergency plans (90%)
    • Processes/written protocols for co-management of care (90%)
    • Involvement in planning for discharge of patients from hospital and ED and re-evaluation of patients post discharge (90%)
    • A system in place to learn about community-based organizations and available resources (90%)

Teams also worked to improve systems that track children with genetic conditions in order to ensure appropriate follow-up, communication, and care coordination takes place.

Project Measures
Chart Review and Registry Measures
The data for these measures were captured through the online Quality Improvement Data Aggregator (QIDA) system.      

Process and Balancing Measures
The data for these measure were captured through the monthly progress report survey.      

Thirteen primary care clinical teams were selected to participate in this quality improvement project. The selected practices represented a diversity of geographical locations, practice settings (urban, rural, and suburban), practice size, and type of organization (e.g., private practice, FQHC, hospital outpatient departments).

In order to be selected as part of the project, the primary care practice had to have a minimum of 5,000 patients aged 0-21. At least 75% of providers (physicians, nurse practitioners, and physician assistants) in the practice needed to be willing to participate, with a minimum of 2 providers per practice. Not all providers had to participate on the core improvement team, but they had to be willing to test changes and include patient charts for review. A physician had to lead the project team. Solo practices were not eligible to participate.

It was suggested that the team consist of 3 members, including a lead physician, clinical support staff (e.g. nurse), and an administrative or office staff person. Click here to see a list of all of the clinical teams

Clinical teams were responsible for:

  • Physician leader only: serve as Local Leader in the attestation process required by the American Board of Pediatrics (ABP) for Part 4 Maintenance of Certification (if approved). Includes providing each physician in practice interested in participating for MOC credit a document describing the requirements of their participation, monitoring physician participation, and attesting that they met the project's completion criteria.
  • Devoting necessary resources and time to testing and implementing changes in practice over a specified 6 months, while collecting data from patient charts each month, and working to obtain buy-in from all members of your practice.
  • Completing 1 month of Pre-work activities prior to the learning session (improvement workshop), including completing a pre-survey, collecting baseline chart data, and identifying your population of patients with defined genetic conditions. Chart review will be completed using the Academy's Quality Improvement Data Aggregator (QIDA).
  • Attending a 1.5 day learning session at the beginning of the 6-month action period.
  • Learning the Model for Improvement and implement Plan, Do, Study, Act (PDSA) cycles.
  • Making appropriate changes in the structure of how care is monitored and delivered to patients.
  • Regularly collecting and transmitting clinical measurements pertinent to the aims of the project.
  • Each month for 6 months, reviewing charts of 10 health supervision visits for patients age 0-21 years old and monitoring/reviewing/collecting data on practice registry of all patients with defined genetic conditions. Completing a monthly narrative progress report each month. The data collected was identified by practice name and available for all project participants and leadership to view during the course of the project through the QIDA.
  • Practices were given the option of using the National Coalition for Health Professional Education in Genetics (NCHPEG) pediatric family history tool, a tablet based tool. For practices that choose to use the tool, an automatic follow-up survey was asked of the parents who complete the family history using the tablet-based tool. A separate IRB application was submitted for the parent survey if this is included.
  • Testing innovations in care delivery to improve the delivery of genetic services.
  • Sharing lessons learned and problem-solve with other participating practices through monthly conference calls and e-mail.
  • Using e-mail and the Internet on a regular basis for ongoing support, information, and communication among practice teams.
  • Completing a post-survey at the completion of the project.
  • Attending a 1.5 day learning session at the end of the 6-month action period.
  • A subset of practices participated in a post-action period qualitative interview during the final learning session.
  • If necessary, sought Institutional Review Board approval for participation prior to completion of pre-work.

Project Design:

  • Baseline assessments: Clinical teams assessed their current level of performance with respect to implementation of care processes related to genetics in primary care.
  • Regional Collaborative Mentors: A Regional Collaborative representative (medical geneticists and genetic counselors) identified through the National Coordinating Center for the Regional Genetic & Newborn Screening Service Collaboratives were assigned to each practice. The RC Mentors communicated with the teams throughout the project, serving as a local resource and expert for referrals, best practices and to identify regional tools.
  • Learning Session 1: Clinical teams were oriented to the draft materials/tools, received results from baseline assessments, and were trained on the quality improvement methodology (Model for Improvement) for implementing process changes in a face-to-face session.
  • 6-month testing phase: Clinical teams developed a plan to improve care processes; utilized PDSA cycles to test tools, measures, and data collection instruments related to same; and reviewed monthly run charts.
  • Monthly conference calls: Clinical teams shared results of their tests with project faculty and other teams, questions were answered, and specific topics were discussed.
  • Learning Session 2: Clinical teams came together face-to-face at the end of the project to review preliminary project results, learn from the successes of other teams, and discuss and plan for sustainability and spread.
  • Optional Post-Action Data Entry: Clinical teams had the option to enter chart review and registry data for the six months post-action period in order to support sustainability and holding the gains which they made on the integration of genetics into their practice.
  • Six month post-Action Period Data Entry – for Sustainability: In order to assess how the improvements were sustained, clinical teams submitted chart review and registry data six month after the action period ended.  The majority of practices did submit data.
  • Qualitative Interviews: Research consultants performed 30-45 minute phone qualitative interviews with the clinical teams six months after the project action period. The clinical teams shared feedback about strategies that worked, as well as how they continued or sustained their improvements as a team.  The data was part of the project evaluation.

Project Data Collection included:

  • Chart Review | Instructions for Chart Review      
    • Pre-work: Baseline chart review (20 charts entered into QIDA)
    • Action Period (6 months): 10 charts entered using QIDA PLUS reviewing a registry of patients with known genetic conditions each month
  • Practice Inventory Survey: At pre- and post-, teams were asked to assess existing systems for providing care using this inventory.
  • Monthly Progress Reports: Monthly progress reports allowed clinical teams to describe specific changes and tools they have tested. They helped faculty to monitor progress and needs of practice teams.
  • Learning Session Evaluation: A standard workshop evaluation was used to determine the effectiveness of each learning session. LS1 | LS2

Resources for Clinical Teams

Learning Session 1 Power Point Presentations

Learning Session 2 Power Point Presentations


Family Health History (FH) Tools

Genetic Conditions Management Tools


Successful QI Strategies for Integrating Genetics into a Pediatric Primary Care Practice

  • Project Report Out: Successful QI Strategies for Integrating Genetics into a Pediatric Primary Care Practice (June 2014)

Special thanks to the Expert Group:

  • Amy Driscoll, MD, FAAP (co-Chairperson)
  • Beth A Tarini, MD, MS, FAAP (co-Chairperson)
  • Wendy Chung, MD, PhD, FACMG
  • Abdallah F Elias, MD, FAAFP, FACMG
  • Ruth Gubernick, MPH
  • Kerry Balwin Jedele, MD, FAAP, FACMG
  • Ingrid Larson, MSN, RN, CPNP
  • Beth A Pletcher, MD, FAAP, FACMG
  • Michael L Rinke, MD, FAAP
  • Lisa M Vasquez, MPA
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