HealthLNK Registry Portal (HRP)
We are delighted to offer a comprehensive solution for building healthcare data registry portals. Our solution is flexible and configurable to build any type of medical and QI registry. Our standard three prong approach suffice most of the requirements, which includes:
- Dedicated web based project front-end
- Customized data collection via REDCap secure platform
- Analysis, reporting & governance
1. Project Front End:
Our team provides a personalized web hosted landing page for each project. It is usually a web portal with role based accessibility built-in, and hosts all public information material. It also serves as a guide to access REDCap survey portal for data entry and may display some selective aggregated reports.
2. REDCap Customized Data Collection:
This middle layer is the data collection tool via customized survey(s) or other frameworks. HealthLNK has its own REDCap instance hosted in a secure environment. REDCap* (Research Electronic Data Capture) data collection projects rely on a thorough study-specific data dictionary defined in an iterative self-documenting process by all members of the research team with planning assistance from the HealthLNK group at Northwestern University. REDCap contains a Survey tool for building and managing online surveys. The research team creates and designs surveys in a web browser and can engage potential respondents using a variety of notification methods. Both REDCap and REDCap Survey systems provide secure, web-based applications that are flexible enough to be used for various types of research, provide an intuitive interface for users to enter data and have real time validation rules (with automated data type and range checks) at the time of entry. These systems offer easy data manipulation with audit trails and reporting for reporting, monitoring and querying patient records. It also has an automated export mechanism to common statistical packages (SPSS, SAS, Stata, R/S-Plus).
Once identified, each patient is provided with a username and password to access the REDCap system. Surveys can be filled in at more than one sitting and only get recorded on final submission. Additional customization can be provided as per the guidance from project stakeholders.
3. Analysis, Reporting & Governance:
We also provide a dynamic reporting system as a visualization layer for each project. This helps stakeholders in governance of the registry. HealthLNK collects and houses data, and may be made available to authorized users for tracking purposes.
Lastly, aggregate survey data will be extracted to a separate server database with advanced analytic capabilities. We will stage the data into a comprehensive structured database according to a predefined data-model and a standard vocabulary. All subsequent on-boarding will take place in the same database for ease of aggregate reporting. This will enable not only targeted reports for each framed query, but also help measure the effect of other factors on data collection from providers. The analytics team will observe trends with the project execution team and prepare reports for the grantee.
*Paul A. Harris, Robert Taylor, Robert Thielke, Jonathon Payne, Nathaniel Gonzalez, Jose G. Conde, Research electronic data capture (REDCap) - A metadata-driven methodology and workflow process for providing translational research informatics support, J Biomed Inform. 2009 Apr; 42(2):377-81.