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New Tool Can Help Patients and Family Caregivers Get, Use, Share Health Records

Each year, hundreds of thousands of patients request copies of their medical records under HIPAA, the nation's privacy law. Completing the request often means filling out confusing paperwork and struggling to obtain electronic formats that can be easily placed in an app or other secure location. The technology exists to streamline this process for everyone involved—patients, providers, and medical records experts alike—but the US health care system has struggled to move forward.

That's why a diverse and powerful group of HIT experts joined forces to develop a new digital health records request approach, recently released at the Biden Cancer Summit in Washington, D.C. Led by X4 Health, a purpose-driven organization founded by consumer advocates, the new prototype tool, called the "Health Record Request Wizard," streamlines and simplifies the records request process and promotes digital formats. The effort was supported by a grant from the Commonwealth Fund.

"The Wizard is a game-changer for patients, families, and health care providers alike," says Christine Bechtel, cofounder and president of X4 Health. "This tool will help bring an outdated process into the 21st century and make it easier to obtain and organize health records in electronic formats, ultimately helping create a comprehensive picture of a person's health."

Aneesh Chopra, president of CareJourney and former US Chief Technology Officer who served as an advisor on the Wizard project, says, "The Wizard is a true consensus-driven reference implementation for something we so desperately need—an easy way for patients to request digital copies of their health data in the form and format of their choice. By designing the Wizard with key stakeholders—patients, medical records professionals, apps, and others—it offers an 'easy button' for implementation. As such, I call on all health care providers to adopt and use this framework."

The tool is the result of a year-long research and development effort to build upon the popular model form previously created by AHIMA, a key collaborator in the Wizard creation. The Wizard is a digital "smart form" that uses branch logic and skip patterns to help consumers articulate what they need, in what format and by when. It results in a highly specific, HIPAA-compliant document delivered to the health care provider's medical records specialist. The project involved testing with consumers and HIM professionals; results can be found online at X4Health.com/healthdata.

"The Wizard takes the model form, developed by our member volunteers at AHIMA, one step further," says Pamela L. Lane, vice president for policy and government relations at AHIMA. "It provides an innovative tool that can be used by health information management professionals to change workflow processing for consumer-generated information requests. The Wizard will help create ever-better consumer engagement experiences by streamlining complexity in the healthcare environment."

A number of leading organizations have committed to incorporating key lessons from the Wizard project—and potentially the tool itself—into their own work. "These organizations are forward-thinking leaders who believe in putting the needs of consumers first when it comes to their health data," Bechtel says.

Organizations include CIOX, a leading health technology company that powers the majority of health records requests and fulfillments in the United States. "We're enthusiastic about integrating the lessons learned from the Wizard into our products as part of our commitment to ensuring accurate and usable clinical data gets into the hands of those who need it most—doctors and patients," says Paul Roma, CEO of CIOX.

Committed organizations include the following:

Dozens of organizations and individuals were involved in the development and testing of the Wizard, including representatives from AHIMA, CARIN Alliance, CareJourney, Swellbox, and more—as well as community-based patients and families.

In addition to a live prototype of the Wizard, found at healthrecordwizard.com, X4 Health released an implementation package detailing how others can operationalize and expand the Wizard. More can be found atX4Health.com/healthdata.

— Source: X4 Health