Communicating Genetic Concepts to Primary Care Providers: ACMG ACT Sheets as “Just in Time” ResourceSprague, Trinity (2021) Communicating Genetic Concepts to Primary Care Providers: ACMG ACT Sheets as “Just in Time” Resource. Master Essay, University of Pittsburgh.
AbstractIntroduction: As genetics become increasingly incorporated into healthcare, the role of primary care providers (PCPs) in diagnosing and caring for people with genetic conditions will continue to grow. However, many PCPs do not feel they have adequate resources to be successful in this role. This project looked at usage of the ACTion (ACT) Sheets, a “just-in-time” reference resource made by the American College of Medical Genetics (ACMG) in collaboration with the National Coordinating Center for Regional Genetics Networks (NCC). ACT Sheets provide a one-page summary of over 80 genetic conditions. These fact sheets include information relevant to PCPs such as differential diagnosis, next steps, potential referrals, and available management options. By making this information available to PCPs, development and marketing of the ACT Sheets fall under the third essential public health service – Inform, Educate, Empower. Methods: This project analyzed website usage statistics from the ACMG webpage where the ACT Sheets are posted. Access information by state was then compared to PCP density in each state to explore whether the ACT Sheets were being used as expected. Overall usage was compared to the schedule of conferences where NCC staff promoted the ACT sheets to determine if this impacted actual ACT Sheet usage. Responses to a brief survey regarding frequency of use and satisfaction with the ACT Sheets were also analyzed. Results/Conclusions: Visitors to the webpage were from all 50 states. There was a direct relationship between the state population or number of PCPs and number of visits. For impact of promotional activities at conferences, there was evidence for higher ACT Sheet usage in months where the NCC attended at least one conference. Most survey respondents were satisfied with the ACT Sheets and reported using the resources more than once a year. Limitations: The ACMG website is a public website, so it is possible that a significant number of visitors to the ACT Sheet page and respondents to the survey were not PCPs. The website usage data was also pulled from the main page displaying the ACT Sheets, so it may not represent how often individual ACT Sheets were viewed. Share
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