Frequently Asked Questions

A secure, private, curated, integrated collection of healthcare data offers a rich repository supporting clinical research as well as a variety of other constituencies. Further, data that is mapped to industry standards (OMOP, FHIR, etc.) provides unparalleled opportunities for analysis, reporting, and cohort creation. Specific benefits include:

• A clear understanding and depiction of long-term trends in specific patient populations
• Improved design and more efficiently populated data can help to create high-quality clinical trials, bringing treatments to patients faster and at lower costs
• Higher fidelity and integrity of data characterizing specific diseases and their biomarkers
• Real-world evidence to support a better patient experience, influence healthcare policy and facilitate fact-based funding decisions

No. In the past, registries were rigidly designed databases supporting a particular purpose, such as collecting names and addresses or recording complex clinical data. A registry without appropriate structure and endpoints is too confining and brittle, providing few, if any, options for reusability.

Today, state of the art technology enables the creation of registries that start with one function (e.g., cohort creation or pharma portal) and grow as the organizations’ needs expand and change. New registry designs allow for direct data input and analysis from a wide swath of constituents, (patients, clinicians, investigators, pharma, etc.). They are built for a known or unknown future as newer technologies allow for both horizontal and vertical scale. Secure, Cloud-based solutions permit entitled access from anywhere in the world, making always-current global registries possible.

There are five important differentiators that Pulse Infoframe delivers to its clientele:

• A single cloud-based platform containing multiple registries, providing the ability to examine of different diseases and enabling the identification of cross-disease insights.
• Our platform can offer multiple viewpoints based on roles, delivering a rich natural patient history (the patient journey) and a wider breadth of data than competing registries.
• Approachable, easy-to-use analytics, enabling the gathering and harmonizing of a broad cut of healthcare data. The platform technology ensures the most current version, highest integrity of data is available for analysis and reporting requirements.
• Our multi-year experience in overcoming the challenges of multi-site, international deployment, and data collection.
• Clinical relevance and FDA and EMEA compliance; many other registries focus only on administrative information or benchmarking.

Yes! We have several processes, policies, and technology to ensure data is secure, private, and only available through our attribute-based access controls (ABAC) to those who have been assigned the appropriate access and entitlements.

healthie™ supports single sign-on (SSO) with SAML 2.0 compliant systems and attribute-based access control for all users, administrators, staff, etc. We also support multi-factor authentication (MFA) for organizations requiring the highest possible security requirements.

We offer a number of data collection capabilities.

• Clinicians, patients, etc. can directly enter patient-specific data into healthie™.
• EHR and genomic data, diagnostic lab results, claims data, legacy registries, and other data sources can also be ingested via secure bulk transfer.
• Participants can consent electronically using DocuSign, facilitating signup to clinical trials and studies, and their data can be collected remotely.

Patient privacy and data security are of paramount importance to us as stewards of this information. As such, security processes and technologies are integrated into all aspects of healthie™. Based on role, patients can access and use data they have entered in healthie™. Registry participants share data for the purposes outlined in a clear and transparent consent form that is digitally available and verified by DocuSign. Patients ultimately have access to their own data and can consent to share their data with providers and other relevant parties. Patients own their data at all times.

What are the capabilities of Pulse Infoframe’s healthie™?

Our scalable, secure, cloud-based platform technology offers an evolving suite of modular services designed to encourage collaboration, deliver real-world evidence insights, enable fact-based decision-making, and improve efficiency.

Some specific capabilities include:

• Patient Engagement Portal: view and update patient information in a user-friendly environment; includes assessment instruments, previously uploaded clinical results, and other educational and engagement tools. Our user interface technologies and supporting workflows create easy to use experiences for users based on their roles
• Data Mapping: data ingested into healthie™ is automatically mapped to the latest healthcare data and interoperability standards to facilitate ongoing real-world evidence research and analytics
• Privacy,  Compliance and Security: Our platform was designed from the ground up to support international regulatory data standards (GDPR, HIPAA, PHIPA, etc). Our role-based access controls ensure only the right people may access the data they are authorized and entitled to see.
• Research Portal and Analytics: easy-to-use tools to configure queries, understand registry status in real time, and glean instant insights. We also plan to offer APIs so organizations may use their preferred tools with the data
• Clinician Portal and Analytics: user-friendly search function, dashboards, workflow and task queues, analytics, scorecards, reporting, and collaboration tools

healthie™ is a SaaS (Software as a Service) application platform delivered on a global virtual private cloud infrastructure. All healthie™ services are accessible through mobile devices, tablets, laptops, desktops; essentially, any  web-enabled device with a browser. No downloads are required.

Registries hosted in healthie™ are branded with the registry’s logo, imagery, and color schemes to ensure the client’s brand identity is maintained.

healthie™ is designed to be approachable, intuitive, and easy to learn. While not required, there are training courses available for those who prefer them or wish to sharpen their skills.

Administrators can build and maintain disease specific surveys with healthie™. Participants are automatically routed to questionnaires based on disease and these questionnaires have advanced branching and workflows to locate the most complete, accurate data seamlessly. Participants can view their previously answered questionnaires on the healthie™ platform.

Yes, healthie™ can send custom automated messages to users, including emails, reminders, etc. about upcoming events and activities.

Since healthie™ is cloud-based, it requires no user-interrupting day-to-day maintenance. The Pulse Infoframe teams perform all required maintenance, preventative maintenance, enhancements, diagnostics, performance monitoring and problem resolutions behind the scenes.