In past blogs, we’ve discussed how health information exchanges (HIE) play a crucial role in transforming the healthcare industry by enabling the systematic sharing of health-related information between disparate clinical systems and various organizations, or stakeholders. HIEs have demonstrated their ability to improve the clinical and financial performance of healthcare organizations and, if properly designed, can have a clear and commanding return on investment. Promoting sustainable HIEs plays an important role in the improvement of quality, safety and cost-effectiveness of healthcare delivered throughout the country. They ensure that patients, providers, payers and others involved have access to the right information at the right time.
To ensure success, however, HIEs must be able to share a patients’ medical information. For that to happen, an HIE must have a way to obtain meaningful consent and the support of patients. One of the main issues affecting the development of health information exchanges is the role of consumer participation. Consumer education is necessary for establishing trust in an HIE. Many polls and surveys have shown that consumers support the implementation and exchange of EHRs because they can improve patient care and reduce the number of unnecessary tests and procedures.
In our blog on the privacy and security of HIEs, we pointed out that even as an HIE enables an environment with new capabilities and opportunities, it also brings about new challenges. Without consent from patients to share their data, the viability and therefore sustainability of an HIE is limited significantly. Thus, HIEs face a multi-faceted decision on how and when to obtain patient consent. The choice of a consent model affects a multitude of stakeholders, from patients to payers and providers, and can have an impact on the way the HIE is structured.
The two main options HIEs usually use for patient consent are the opt-in and opt-out approaches. With the opt-in consent model, patients have to give formal consent before any of their data is shared through the HIE. Conversely, with the opt-out model, patient information is automatically included unless patients choose to remove some or all of their data. According to Jennifer Covich Bordenick, CEO of eHealth Initiative (eHI), the opt-out approach is currently used most among HIEs because it is the easiest to do initially, although more HIEs may switch to the opt-in model as other HIEs have success with that model.
With either model, the decision must take into account consumer concerns and needs, state laws, structural limitations, policy decisions and more. Decisions should only be made following research of all related issues and should focus on the needs of all involved stakeholders. Education on consent needs to highlight the safeguards to ensure high levels of privacy and security. Therefore it is necessary to educate patients on the consent process including who has access to their information and privacy issues concerning confidential medical records such as substance abuse records, mental health records and STI/HIV related records.
A prime example of a current HIE utilizing patient consent is HEALTHeLINK, one of the country’s most successful RHIOs. Companion to HEALTHeLINK, is Western New York’s administrative information exchange, HealtheNet, powered by APP Design’s RHIOnet. RHIOnet provides real-time, online services including health plan eligibility and benefit verification, claim status and inquiry, referral submission, single sign-on and more. APP Design was selected to design and develop a real-time patient consent interface to HEALTHeLINK to increase patient consent by delivering consent status through the eligibility transaction.
The interface, using NHIN XDS.b standards, enables HEALTHeLINK to gather more consent for an opt-in state and further integrates administrative and clinical workflows to reduce costs and improve outcomes for WNY patients. Through the interface, authorized users of WNYHealtheNet are able to retrieve HEALTHeLINK patient consent status during eligibility verification, saving time and multiple logins. This project again uses APP Design’s RHIOnet, a Web-based healthcare information exchange system designed to deliver accurate and timely healthcare data to caregivers distributed across wide geographical areas.
APP Design also was recently awarded a contract by the Office of the National Coordinator (ONC) for Health Information Technology to support its e-consent trial. The e-consent pilot program is scheduled to take place at four provider sites within HEALTHeLINK. Once a consent form is signed by a patient, physicians and other health-care providers who are involved in the patient’s care can securely access their lab results, tests, radiology reports, transcribed reports, medication information and a range of other health information to better treat the patient.
Though the model implemented by WNYHealtheLINK has proven successful, an HIE is only as good as consumers’ willingness to allow their data to be shared in ways that clinicians find valuable. In addition, that willingness will drive the usefulness of the HIE and its sustainability. HIE administrators and healthcare providers are themselves healthcare consumers, and their decisions about patient involvement in the HIE should reflect that.
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