Vaccination is an essential pillar of public health and a successful, cost-effective strategy to protect individuals from communicable diseases. Vaccine preventable diseases (such as, measles, mumps, rubella, and varicella) can travel quickly through a community and infect large numbers of people.[i] There are certain populations such as those with compromised immune systems or serious allergies that cannot receive vaccinations. Therefore, it is imperative for communities to maintain high vaccination rates to foster community immunity or “herd Immunity” to protect against contagious diseases.[ii]
Immunization Information Systems (IIS) are registries which keep track of immunization records for people of all ages. IIS provide valuable information to families, schools and health care providers to understand what immunizations someone has received and which immunizations they need to receive.[iii] In the past, immunization records could only be obtained by telephone requests or in-person visits to a provider’s or state health department office. This process can be time-consuming and burdensome for providers, patients, and state health departments, especially during the back-to-school season and disease outbreaks, when providers receive a high volume of immunization records requests. Recent initiatives have allowed consumer-controlled access to IIS records. This fosters better-immunized families and reduces immunization record-related entry barriers to schools and childcare.
In 2013, the U.S. Department of Health and Human Services (HHS) launched the Consumer Engagement for IIS Project. The primary goal of this project is to encourage consumer access to online immunization records, thereby empowering informed decision making. This project, which is managed by Audacious Inquiry, is a collaborative effort between the Office of the Chief Technology Officer, Scientific Technologies Corporation, and the Centers for Disease Control and Prevention.
The Consumer Engagement for IIS project includes the following key focus areas:
- Technical Implementation: An immunization-specific portal called MyIR (My Immunization Record) was implemented in pilot states (Louisiana and Washington) to enable online access to personal immunization records and forecasts schedules. The portal leverages the HL7 (Health Level 7) 2.5.1 standard to bidirectionally query and exchange immunization records with state or regional IIS.[iv] Use of the portal requires consumers to complete a registration and identity proofing process to be able to query the IIS for their record.
- Authentication: After a consumer registers with the MyIR platform, their account must be authenticated. Initially, authentication of IIS users was conducted through identity proofing which required provider involvement. However, in 2016, an online two-factor authentication process was enabled allowing consumers to register complete the identity-proofing process online.
- Marketing: The project team implements various marketing strategies to increase program awareness and engagement with the MyIR tool in pilot states. Marketing materials were reviewed by focus groups before distribution to state health departments, providers, consumers, and other stakeholders. In addition, digital advertising campaigns were launched in key market areas to increase consumer engagement for various immunization record use cases such as: back to school, camp registration, and travel requirements.
- Evaluation: As a pilot project, evaluation efforts provide feedback to improve upon the previous project year’s activities to increase consumer access to online immunization records. Evaluation activities include compilation and analysis of weekly registration metrics, collecting online consumer survey feedback, conducting state key informant interviews, and review of Google Analytics.
As of the sixth year of the pilot project (2018 – 2019), there are over 58,000 individuals with activated MyIR accounts and 140,000 registered accounts across the current two active pilot states, Washington and Louisiana. Initially, registering for MyIR required visiting a provider to complete the identity proofing process. However, in May of 2016, the Online Authentication process was implemented which allowed consumers to complete the registration and identity proofing process autonomously using two-factor authentication. This included the individuals’ registration data (something they know) and the use of their cell phone or home address (something they own). By enabling consumers to complete the activation process on their own, there was a 125 percent increase in activated accounts during the third year of the project. As such, marketing efforts focus on increasing consumer awareness of the benefits of the MyIR tool and how simple it is to electronically access immunization records through MyIR.
Evaluation of prior years’ activities have informed the next steps for the Consumer Engagement for IIS project:
- Increase consumer access to immunization records through MyIR by improving the registration workflow.
- Implement new marketing activities such as, leveraging paid social media advertisements.
- Enable consumer access to immunization records through alternative electronic health record approaches such as tethered/untethered electronic health record (EHRs) and school-based patient portals.
- Conduct an environmental scan of IIS, state immunization programs, and vendors to gain a better understanding of limitations and methods for expanding consumer access to immunization information system data.
As a result of lesson’s learned through the initial phase of the Consumer Engagement for IIS project, HHS kicked off the Human Centered Design Patient Portal and IIS Connectivity Project in June 2019. This project will inform how personal health record vendors and/or third-party applications can best collaborate with IIS to provide consumers with access to their immunization records.
Human centered design research principles will be used to streamline the process of obtaining access to immunization data for consumers. Consumer feedback will be obtained to ensure that products are designed based on their needs and identify ways to ease the registration and authentication process. Consumer feedback will be gathered via surveys and interviews and products will be iteratively refined and updated as feedback is received.
Consumer input will be obtained through the following phases:
- Low-Resolution Phase: An iterative approach will be taken to inform development requirements. Through seven iterations, 50 individuals will be interviewed and surveyed through a series of webinars. Participants may include but will not be limited to patients/consumer, medical professionals, public health officials, health information technology (IT) innovators/executives, and technologists. These participants will be asked to inform design and usability, identify ideal features, and help identify pain points. Participant feedback will be incorporated into the product designs in advance of the high-resolution phase.
- High-Resolution Phase: For this phase, initial requirements and design documents will be shared with two personal health record vendors for integration into their products. Using a set of test users from each personal health record (PHR,) vendors will use an iterative approach with approximately three iterations to ensure design principles are implemented in their products. This phase will use a survey method as well, but will include PHR specific wireframes for review, interactive prototypes, and more in-depth questions to gather feedback from consumers.
- Pilot Phase: The pilot phase will include large scale testing of the two PHR implementations with 200 users for each product. The project team will review user feedback and metrics to evaluate pain points and progress made.
- Roll Out and Evaluation Phase: Informed by the pilot phase, there will be a large-scale product and integration roll out that will align with marketing efforts that began in the low-resolution phase of the project. There will be an evaluation of the entire project, helping to inform a future phase that will leverage lessons learned from this project to integrate additional PHRs and IIS so that consumers can more broadly access their immunization records.
If you are interested in participating or learning more about the Consumer Engagement for IIS projects, please reach out to Kelly Carulli (firstname.lastname@example.org) or Michelle Consolazio (email@example.com).
Director | Audacious Inquiry
[ii] Centers for Disease Control and Prevention. (2018). What Would Happen If We Stopped Vaccinations? Retrieved from https://www.cdc.gov/vaccines/vac-gen/whatifstop.htm
[iii] Williams, W. (2017). Immunization Information Systems (IIS) Fundamentals: Overview and Development. Retrieved from https://www.hhs.gov/sites/default/files/Williams_IIS%20Fundamentals%20remediated.pdf
[iv] Centers for Disease Control and Prevention. (2014). HL& Version 2.5.1: Implementation Guide for Immunization Messaging. Retrieved from https://www.cdc.gov/vaccines/programs/iis/technical-guidance/downloads/hl7guide-1-5-2014-11.pdf