Navigating Disruptive Forces’ Rockiest Road
Information Liberation sparks disagreement, controversy
Of the six transformative shifts identified in the Alliance for Children and Families’ report, Disruptive Forces: Driving A Human Services Revolution, none has provoked as much skepticism or controversy among Alliance members as Information Liberation.
“Information Liberation is the least understood force, and probably the most powerful, because it pushes us to think about our world differently. If we want to have more impact on issues like poverty and child well-being—issues our sector has been working on for more than 100 years—we’ve got to work more collaboratively and holistically,” says Undraye Howard, vice president of the Alliance Intellectual Capital Division. “That means we’ve got to move away from information silos and territorial behavior.”
In most cases, Alliance members and other human-serving organizations are legally and ethically committed to client confidentiality. However, Disruptive Forces asserts that privacy regulations, such as the Health Insurance Portability and Accountability Act (HIPAA), are becoming outdated as technology and consumer habits change.
Privacy regulations, the report cautions, are sometimes used as an excuse to avoid systemic changes that promote integrated care and collective impact. By moving toward new coordinated service delivery models that are supported by communities of shared information, organizations will be able to provide better care and consumers will have greater control over their information.
Alliance member Starr Commonwealth, Albion, Mich., primarily serves children and young people, the generation most enthusiastically sharing personal information through social media. Yet, Elizabeth Carey, chief strategy and administrative services officer, says she believes that, as technology accelerates information sharing by individuals, even more privacy regulations on providers will be required by licensing entities, accrediting bodies, and funders.
“I can’t see Information Liberation happening anytime soon. Our field is experiencing more restriction because of professional liability, not less,” Carey observes.
In a move to strengthen privacy and security protections, the Department of Health and Human Services (HHS) released the final HIPAA Omnibus Rule Jan. 17.
Effective March 26, the rule expands the definition of business associates, which are liable for compliance with HIPAA, to include contractors and subcontractors; strengthens the previous notification protocol organizations must follow when a breach of protected health information occurs; and gives additional protections and rights for individuals over protected health information. HHS is enforcing this rule by doling out considerable fines to providers not in compliance due to willful neglect.
However, Matt Obert, director of operations at Alliance member Chaddock, Quincy, Ill., says organizations should not ignore evidence that the information revolution is already upon us.
“Information Liberation is already happening; but, the health care and human services sectors have been lagging behind other industries,” Obert says. “If the government itself doesn’t change health care privacy policies, I think the public is going to demand that it be changed.”
The movement to liberate information is fueled by new information technology, recent health care legislation, and federal funding priorities. Obert urges behavioral health organizations to grab a seat at the table quickly. Otherwise, he says, the government, medical providers, and information technology developers will define the future of health care delivery without them.
“We have to leverage the power of technology within our sector, and we need a privacy standard that balances confidentiality with empowering patients, and improving quality and continuity of care,” says Obert. “That doesn’t just save money; it saves lives.”
Jana Judisch, quality assurance coordinator at Alliance member The Village Family Service Center, Fargo, N.D., believes today’s privacy regulations were designed for a different era and can sometimes be a barrier to prompt, effective care.
“We have so many different privacy regulations, and one trumps the other, so we have to be very careful. There is almost an element of fear among staff; they feel hampered in performing core job functions because they spend so much time carefully exchanging information,” says Judisch.
Privacy policies and procedures also add time to the intake process, slowing the agency’s ability to promptly get clients the help they need, Judisch notes. The Village has implemented an electronic health record (EHR) for its counseling programs to streamline access to information. Staff access EHRs remotely through phones and tablets on a need-to-know basis.
Also, The Village’s clients are frequently asking to communicate by email and text. With written consent, the agency will schedule appointments or send paperwork electronically. Judisch believes the organization must meet clients where they are most comfortable in terms of communication. However, they continue strong privacy practices. Consent forms include cautionary information about electronic communication and staff are continually trained to limit exchanges of information to the minimum necessary.
Leveraging Social Media
Starr Commonwealth also is responding to the needs and behaviors of its stakeholders by leveraging social media to connect and share stories. Starr boasts more than 550 Facebook fans and John Hollingsworth, director of communications, plans to use Twitter and a range of other channels to engage a broader range of people in conversations.
“The dynamic is changing. Clearly young people are becoming more comfortable with sharing personal information,” Hollingsworth says. “Our alumni are connecting with the agency through social media, self-identifying, and sharing stories of their experiences at Starr.”
Although Starr Commonwealth is working with social media more deeply, the organization is extremely cautious about what it publishes. The organization rewrote its social media policy recently to restrict staff communication with former clients through social media.
Starr also uses social media to expand the reach of its Global Learning Network, which is being developed into a social and professional networking space in its own right. The Global Learning Network already connects thousands of clinicians, educators, child care workers, and parents around the world to webinars and trainings, blogs, and other helpful online information.
New Opportunities for Collaboration
Collaborative work is the area in which Information Liberation is most necessary and will be most transformative. It’s here that many Alliance members have the most significant opportunities.
Research continues to confirm the impact of behavioral, environmental, and social factors on a person’s health. The federal government is focusing on collaborative health care models, such as managed care organizations and health homes to address patients holistically, in an effort to improve health outcomes and decrease health care costs.
Health care reform is putting the creation of these new models into overdrive. Child welfare and family service organizations are positioning themselves to serve as the behavioral health entity of these integrated networks, partnering to ensure that patients receive wraparound services and support.
Collaborations also can move the dial on health care and other systemic issues. Yet, how openly and effectively information is shared among a community of stakeholders will affect its ability to achieve collective impact. Thus, collaborations must first define universal standards of privacy, meaningful usage, and data interoperability. Achieving that kind of consensus won’t be an easy task.
Alliance member The Opportunity Alliance, Portland, Maine, is finding new opportunities in collaboration—and challenges in information management. The agency is creating place-based, multi-disciplinary resource hubs in at-risk neighborhoods and hopes to partner with medical providers in co-located health homes.
Among The Opportunity Alliance’s biggest challenges are creating common outcomes, a shared measurement tool, and moving to one client management system—no small feat for an organization that recently identified 26 different internal data collection systems, none of which speak to each other.
“Any organization going down this path is going to struggle with this,” says Elizabeth Banwell, chief strategy officer at The Opportunity Alliance. “Somehow we will find a way.”
Alliance member Peninsula Family Service, San Mateo, Calif., also is working more frequently in collaborations. The agency has contracts with two area health systems to provide behavioral case management to older adults. Under both contracts, the agency works with a network of community partners that support a continuum of care.
One of the contracts, the Sequoia Hospital Homecoming Project, just completed its third year and is embarking on an expansion, which will create a hub for the hospital’s transition of care program. Partners will share a common assessment form. Based on the patient consent, the hospital will “own” the information, but all of the community partners will be able to access specific information and share appropriately between themselves.
“One of the main goals of the program is to make information sharing easier and better so we can more effectively serve the client and measure impact,” says Susan Houston, director of older adult services for Peninsula Family Service.
Information Liberation is integrally tied to two other disruptive forces, Uncompromising Demand for Impact and Branding Causes, Not Organizations. Together, these forces compel nonprofit human-serving organizations to be technologically savvy; to create innovative, integrated systems of care; and to work collectively to achieve the greatest long-term impact.
Disruptive Forces encourages nonprofit professionals to think outside their comfort zones, engage in tough conversations, and see opportunities where others see roadblocks. Organizations that recognize the implications and opportunities inherent in these forces will innovate at a level previously unimagined.
Disruptive Force Two: Information Liberation
The Alliance's report Disruptive Forces: Driving A Human Services Revolution predicts an uncompromizing demand for impact will significantly affect the nonprofit sector in the next three to five years.
Regulations such as the Health Insurance Portability and Accountability Act go to great lengths to ensure information confidentiality, but they will become outdated. A new generation of consumers will share information about themselves with friends, family, and communities, both live and virtually. Information sharing can improve service delivery models such that they ultimately give consumers more control over how their information is shared and allow other agencies in the same continuum to provide better care.
Learn more about the Alliance Disruptive Forces project.
Drivers of the Information Revolution
- The federal government is promoting a nationwide conversion to electronic health records and the creation of health information exchanges. The health insurance exchanges mandated at the state level are predicated on sharing this kind of quantitative information.
- Federal legislation and funding are promoting the creation of health homes, managed care organizations, and other integrated care systems to improve access, continuity, and outcomes, and restrain costs.
- A new generation of consumers is sharing unprecedented personal, qualitative information through social media. They also demand instant access to information to make informed decisions.
Severson Center is Go-To Resource for Policies and Procedures
Don't reinvent the wheel. The Alliance Severson Center is a go-to resource for information on policies and procedures.
Profession-Specific Email Groups. Consult with peers within the Alliance network through any of the 12 email discussion groups.
Custom Research. Alliance members have complimentary access to Severson Center librarians, who can assist with a variety of information needs.
Severson Center Issue Briefs
The implementation of health care reform is greatly affecting Information Liberation. The Alliance Severson Center is building a collection of issue briefs to help members understand best practices in health care and important concepts in health care reform.
Two issue briefs related to Information Liberation are: