To the Editor:
Thank you for your interest and coverage of Connie, an organization envisioned by the Connecticut General Assembly, to assist healthcare providers and empower consumers and the only data exchange operating in the state that has Connecticut stakeholder representation at all levels of governance.
The story you published does not accurately reflect Connie. We would like to offer the following and request that it be incorporated or published.
Privacy, security, and confidentiality of individuals’ data along with transparency around data collection and release is of paramount importance to the State, Connie’s board, and Connie’s management. Under HIPAA, Connie is not permitted to sell Protected Health Information (PHI) without written authorization from the patient. Accordingly, Connie does not and will not sell PHI.
Access to patient data in the HIE is governed by, and consistent with, Federal and state law, including HIPAA. The HIE does not expand or increase such access rights in any way. Rather, Connie improves the method by which such already-permitted access occurs making it more secure, more timely and more transparent. All participating organizations sign legal agreements that require that access to and sharing of patient data be in compliance with applicable law and for only those purposes authorized by applicable law. No entity can skirt the law and buy subscriptions to the data.
As to transparency, all of Connie’s board meetings, including its Finance & Audit Committee and its Privacy, Security, & Confidentiality Committee, are open to the public, allow for public comment, and recordings of their meetings as well as published minutes are available on the Connie website. Names of entities that are sharing data with Connie are listed on the Connie website and updated weekly. Connie’s data release policy which has been thoughtfully developed, was reviewed in a public meeting, conforms with all laws, is publicly available, and was shared with the CT Examiner. To our knowledge, no other health data exchange operating in the state conducts itself with that same level of openness.
Connie is focused on enhancing the health and well-being of Connecticut residents. It’s disappointing that the comments of some of the clinicians who have benefited from the data and information Connie provides weren’t highlighted in your story. Dr. Nitu Kashyap of Yale New Haven Health System spoke eloquently about the use of Connie Alerts for her care coordinators who are following up with their sickest patients with complex conditions and who need support and care to help them manage their conditions. Dr. Al Villarin of Nuvance Health described the frustration of his clinicians who struggle with delayed care as they try to gather complete medical information to make the best clinical decision for their patients. He also spoke to the benefit of having access to Connie for his emergency department clinicians to care for patients in emergent situations.
Connie will continue working hard to fulfill the vision of the Connecticut General Assembly and meet the goals outlined in its enabling legislation. We intend to stay focused on our work to support clinical decision-making, keep patient medical health information confidential and secure, and advance the state’s public health goals.
Jenn Searls, MHA
Searls is the executive director of Connie, Connecticut’s Health Information Exchange (HIE)