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The next time you or a loved one are waiting in an Emergency Room, there is a high probability that physicians will spend precious time unsuccessfully searching for your missing information.
Patient care today involves seeing a variety of providers and specialists. Unfortunately, practitioners currently have no systemized way to get the whole picture of your health care. That is why we need an electronic health information network. It will enable continuity of care independent of provider type, location or other circumstance—and continuity of care will help reduce medical errors. One day in the not too distant future, your comprehensive medical information will be there when you enter any health care setting—a comforting thought when you need Emergency Room care.
Funding the Solution
In his 2005 State of Union address, President George W. Bush repeated his call for the development of a personalized and universally accessible health record for every American and called for a strong federal role in developing it. The sense of urgency surrounding the health care dilemma has motivated bipartisan action. Sen. Ted. Kennedy (D-MA), Sen. Hillary Rodham Clinton (D-NY), Cong. Patrick Kennedy (D-RI), and Newt Gingrich (former Republican Speaker of the House) are proponents for building IT infrastructure to support a fully integrated (interoperable) health care system that will empower patients and allow physicians and providers to collect, transmit and share information with each other.
We can significantly improve the quality of health care by changing the medium in which medical information is stored and shared.
The Rhode Island Department of Health is one of six states nationally to be awarded a demonstration contract from the Agency for Health Care Quality and Research. The $5 million contract supports a community-based effort to design and develop a statewide Health Information Exchange.
Creating a Process that Works for Everyone
A statewide health information exchange must meet the needs of a wide variety of stakeholders. The system must be secure, protect confidentiality, and make information easily accessible by the appropriate parties. We must address legal barriers and privacy issues. For a project this complex to be successful, the stakeholders must drive the design and development process. That is why the state Department of Health has entered into a Public Private Partnership through The Rhode Island Quality Institute, a collaborative forum that represents all aspects of health care and consumer interest.
How do you modernize 19th century health information infrastructure, address the complexities of medicine and patient privacy, and not have multiple parties working at cross-purposes with each other? Community involvement is crucial.
We have organized our efforts around a consortium of partners, health care providers and users. This framework of working groups is intended to guide discussion, investigation, and experimentation so that we can develop a technical model that will be the basis for building a system that is nimble, consumer-driven, adaptable, and expandable.
Creating a blueprint
A technical model allows us to ask “what if” questions and take into account a wide range of variables. By running different scenarios through our Data Sharing Partners (health care organizations that are volunteering their data and systems) we can determine the most effective way to achieve transfer of information electronically. One of our goals is to increase the number of health care professionals who will adopt a common set of standards for exchanging laboratory data. This will allow crucial information such as blood pressure levels and white blood cell counts to be defined in common terms with common ranges.
Protecting and Empowering the Patient
Consumers already use digital information technology to manage finances, book flights, and research health issues on the web. Research shows that consumers also want to use health information technology to obtain the best possible care and to better manage their family’s health. Although there is high level support for health information technology, keeping medical information private and secure remains a top concern for consumers. Surveys indicate that consumers are concerned about the confidentiality of their medical data regardless of whether it is in an electronic or paper format.
We know from national studies that individuals want the ability to review who has seen their medical information. We know that they want to be asked before their information is shared. They also want to be able to confirm the identity of anyone who sees their records, and they do not want employers to have access to workers’ health information.
So what are we doing regionally to understand and respond to consumer interests? Just as we are defining a set of standards and guidelines that will connect the health information network, we are also working with our Consumer Advisory Committee and our Legal and Policy Committee to develop standards and guidelines that define how patient/consumers will be able to control access to their health information. Our objective is to ensure that the consumer perspective is represented in all aspects of design, development, and governance of the Rhode Island Health Information Exchange. It has became clear that certain safeguards are necessary to protect consumer information and the provider participants in the HIE. These safeguards have been codified in a draft of legislation that has been extensively vetted and discussed through all of the stakeholders and committees involved in the development of the HIE.
