A curated, well-defined data collection resource provides a rich repository for all participants. Benefits include the following:
A better understanding of long-term trends in a specific patient population
Improved design and more efficiently populated data that ultimately provides high-quality clinical trials, bringing treatments to patients faster and at lower costs
More detailed characterization of specific diseases and their biomarkers
Real-world evidence to support healthcare policy and funding decisions
I already have a registry. Aren't all registries the same?
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 provides limited options for future functionality.
Today, state of the art technology enables registries that start with one function (e.g., a patient portal) to grow as the organization requires. New registry designs that allow for direct data input from patients and clinicians alike are built for the future, and the same platform can be used as requirements evolve and organizations grow. Cloud-based solutions permit access from anywhere in the world, making always-current global registries possible.
Are your registries affordable and can they be financially sustained?
Yes. Pulse Infoframe has a proven track record of developing sustainable ecosystems to support registries.
What are the capabilities of Pulse Infoframe's registry?
Our registry is a platform technology called healthieTM, a registry designed to meet international regulatory data standards. It contains a suite of easy-to-use offerings designed to encourage collaboration, deliver real world evidence insights, fast-forward results through appropriate curation and research, and promote efficient use of clinical resources. healthieTM is cloud-based, modular, and offers extensive analytics and visualization tools to enable fact-based decisions.
Key features include the following:
Patient Engagement Portal: The portal offers user-friendly access to view and update patient information includes assessment instruments, clinical results, and other educational and engagement tools.
Data Mapping: Our registry includes the latest data mapping standards (from the Observational Medical Outcomes Partnership; OMOP) to facilitate ongoing real-world evidence research and analytics.
Research Portal and Analytics: This portal includes easy-to-use, browser-embedded tools to configure queries, understand registry status in real time, and glean instant insights.
Core Graphical User Interface: The user interface and workflow are aligned with predefined user needs.
Platform Compliance and Security Modules: These modules continuously ensure that the platform is being used properly and only by authorized users in their assigned roles.
Clinician Portal and Analytics: This includes a user-friendly search function, dashboards, workflow and task queues, analytics, scorecards, reporting, and collaboration tools.
What is Pulse Infoframe's position with regard to data ownership?
We believe that patient privacy and data security are of paramount importance, and security is integrated into all aspects of healthieTM. Patients have access to and can use data they have entered in healthieTM. 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.
What differentiates Pulse Infoframe?
There are five important differentiators that Pulse Infoframe delivers to its clientele:
A single foundation or platform on which multiple registries are integrated to provide a view for different diseases, enabling identification of common insights that might assist in determining effective treatments.
A long-lasting platform and multiple viewpoints, which provide a rich natural history and a wider breadth of data than would be collected in other registries.
Easy to use analytics, ensuring that data are up to date and available for use
Experience in overcoming the challenges of multi-site, international deployment and data collection.
Clinical relevance and FDA and EMEA data standards compliance; many other registries focus only on administrative information, benchmarking or quality.
What kind of application is healthieTM?
healthieTM is web-based and is accessible through browsers, tablets and smart phones. All functions such as reading, editing, and printing can be done from any PC on your network subject to user privileges. No downloadable applets are required and all terminals on the network have full functionality.
Will I have to log off my clinical system to log on to healthieTM?
No; we can configure healthieTM to optimize user workflow and link to the platform via an icon in the clinical system.
Will I need to complete a training course in order to use healthieTM?
Not necessarily, as healthieTM is designed to be intuitive. Training is available for those who wish to sharpen their skills, but it is not required.
No, we apply rich security access controls and segregate the application and the data for our clients to prevent physical access to the information. Pulse Infoframe has integrated comprehensive security model across its internal corporate and healthieTM software platforms. We apply 512 KB digital certificate encryption and SSL for all members accessing the system.
How is data shared between users?
Automatic de-identification functionality is built into healthieTM, and the researcher portal allow other users to view assigned de-identified data.
Is our current virus protection plan compatible with healthieTM?
Yes, Pulse Infoframe offers broad flexibility to enterprise medical systems with multiple hospitals, clinics, and physician practices. Pulse Infoframe supports different levels of complexity and workflow between various sized facilities within your IDN.
What kinds of authentication does healthieTM use?
healthieTM supports both Active Directory- and LDAP-based single sign on and authentication.
How often is healthieTM updated?
healthieTM updates occur quarterly and are scheduled during non-peak hours to ensure no interruption of services.
Does healthieTM allow users to create their own account?
Yes, each user has a username and password and can email to request a password change if they forget their login information. Individual accounts can be linked to create families.
How can data be uploaded and downloaded from healthieTM?
Clinicians can directly enter patient-specific data into healthieTM. There is also has a document upload and data download feature which also allows export directly to Microsoft Excel. EHR and genomic diagnostic lab interfaces and legacy registries can also be uploaded directly.
Does healthieTM enable collection of longitudinal data?
Yes. Longitudinal data can be collected at your convenience, either scheduled or ad-hoc.
What is the healthieTM questionnare tool like?
Administrators can build and maintain disease specific surveys with healthieTM. There is an internal logic to refer participants to questionnaires based on disease/symptoms, and these questionnaires have advanced branching and question skip logic to find the most complete, accurate data. Participants can view their previously answered questionnaires on the healthieTM platform.
Does healthieTM have the ability to consent patients electronically?
Yes. Participants can read the full consent form before they give consent using DocuSign.
Can automated, customized email notifications be sent from healthieTM to participants?
Yes. healthieTM can also send push notifications and reminders to inform participants of upcoming events and appointments.
Does healthieTM enable participants to interact?
Yes, using the platform, patients may meet one another and compare disease specificities if they so choose.
Yes. healthieTM is compatible with mobile devices, tablets, desktops, and your preferred operating system and internet browser. It can also be re-branded or white labeled to client specifications.
How flexible is the healthieTM platform?
The healthieTM platform is highly flexible. Our clients retain their own software environment, including both web application and database servers. Our client environments are scaled to fit the number of anticipated patients, clinicians, and locations.
Can we use our existing VPN technology for remote access to healthieTM?
Yes, VPN is an excellent way to provide physicians and others access to their data from their homes or offices.
Does Pulse Infoframe support large IDNs (integrated delivery networks)?
Yes, healthieTM is a browser-based web application running on your infrastructure.
How much system administrator support will healthieTM require?
healthieTM requires little day-to-day maintenance and the Pulse Infoframe team performs patch management, backup oversight, and periodic log review.