Nurses must engage with HIT policy as patient advocates and clinical workflow experts to ensure that policies are robust and effective.
This is a unique and historic time for nurses to help shape public policies that improve healthcare by expanding access to relevant health data, even as far as determining the type of data considered relevant. Federal agencies such as the Centers for Medicare & Medicaid Services (CMS) and the Office of the National Coordinator for Health IT (ONC), through initiatives such as the Medicare EHR Incentive Program (otherwise known as Meaningful Use), have made commendable efforts to encourage patient engagement in care by improving the HIT tools available. As advocates and health professionals, nurses have the power to bring patient voices into health policies related to information technologies (ITs), including Meaningful Uses.
The members of the nurse-led Project HealthDesign (http://www.projecthealthdesign.org) program used their experience with health IT (HIT) projects to promote significant policy changes, focusing on the development of Meaningful Use rules by the ONC. We believe that all nurses can and should look for opportunities to make similar significant contributions to health policy.
The concept of patient engagement describes the state of participation of patients in their own health and healthcare. The pursuit of patient engagement benefits from a proliferation of HITs, especially mobile devices and applications. Not only do mobile applications targeted toward self-monitoring lead to more self-aware patients, but they also offer clinicians a window into patients’ everyday lives. To stimulate innovation in personal health records, the Robert Wood Johnson Foundation funded Project HealthDesign as a multisite endeavor to develop and implement suites of applications that enable laypeople to self-monitor health and share the information with care providers. While Project HealthDesign personnel assisted patients with tracking familiar, clinically defined signs and symptoms, they also helped patients attend to and act on a new type of health data, Observations of Daily Living (ODLs). The unique sensations, thoughts, attitudes, behaviors, and exposures that give patients cues to their own health status also become the impetus to action. To achieve fully patient-centered care, patient-generated data must include these patient-defined ODLs.
For example, one Project HealthDesign application, Chronology.MD (http://www.projecthealthdesign.org/projects/round-2-projects/chronologymd), gave young adults with Crohn disease the ability to track pain and energy levels in addition to clinical measurements such as B12 levels. These ODLs shifted the focus to a patient’s quality of life, evidence that can remain invisible but is essential to building the best management of care around an individual.
The Project HealthDesign experience with patients and ODLs in turn helped us to provide the ONC with guidance in the form of critique, support, and suggestion of strategies to ensure the inclusion of ODLs in the patient record as part of ONC policy on Meaningful Use.
As described by the Health Information Technology for Economic and Clinical Health Act of 2010, Meaningful Use standards, defined by the CMS Incentive Programs, shape the use of electronic health records (EHRs). Eligible providers and hospitals may earn incentive payments by meeting specific required (Core) objectives and a number of optional (Menu) items. Three stages of escalating requirements provide incentives deriving from data capture and sharing, advanced clinical processes, and improved outcomes. Benefits accrue not only to clinicians and institutions but also to patients, through a focus on patient empowerment and access to more accurate information. Stage 3 Meaningful Use criteria provide an opportunity for the EHR to become a tool for 2-way dialogue and promote patient engagement by bringing ODLs, everyday patient health data, into the clinical encounter.
When the ONC began to develop the model for Meaningful Use, Project HealthDesign was beginning to collect ODL data. Because this new use of technology lacked an appropriate policy framework, we sought guidelines and found that the draft Meaningful Use Stage 3 provision that “10% of patients with the ability to submit patient-generated health information to improve performance on high-priority health conditions and/or to improve patient engagement in care”1 addressed that need. However, Project HealthDesign research indicated that patients would be better served if the ability to incorporate patient-generated data became a Core function of EHRs, rather than an optional item (as originally envisioned).
Our team then began to collaborate with the ONC to codify and ensure the role of patient-defined and patient-generated data in Meaningful Use. One valuable lesson learned from this effort was how nurses can exert significant influence on public policies to improve healthcare and patient outcomes.
Our first task was demonstrating that advancing technologies enabled patient-defined and patient-generated data to be integrated into clinical workflow. At the time, patient engagement strategies primarily meant one-way reporting from the EHR to the patient. In contrast, Project HealthDesign applications devised pathways to allow ODL data to be brought into the EHR, which required HIT to develop the necessary structure to accept these data. To achieve this objective, Project HealthDesign provided feedback on current and future ONC measures through critique, evidence-based support, and advocacy of complementary strategies.
After establishing the need to integrate ODL data, we addressed the issue of simply using ODL data in clinical care versus storing it in the EHR. While incorporating patient-generated data into the EHR is important, our experience demonstrated that efficient use of these data does not require storage in the EHR. In fact, separate storage under the patient’s control may be beneficial. For instance, in Project HealthDesign’s iN Touch study (http://www.projecthealthdesign.org/projects/current_projects/intouch), adolescents and young adults recorded ODL data in a modified version of TheCarrot.com mobile app on iPod Touch devices. The patient participant’s clinical ID number allowed research team members to reconcile the numbered PDF from the clinical document management server with the correct clinical record. The ODL data remained outside the EHR, in TheCarrot.com, but were available to clinicians. Only the summary PDF appeared in the clinical record, whereas a comprehensive data set is preserved externally and can be used for other purposes. This is an important distinction, because of ramifications for an incentive program such as Meaningful Use.
Contributing to policy decisions means not only identifying weaknesses, but also supporting the strengths of proposed rules. It is best to do this with actual practical examples. For instance, Meaningful Use Stage 2 directs: “Use clinical decision support to improve performance on high-priority health conditions.”2 Patient-generated data can make a significant difference in clinical decision support; in Project HealthDesign’s Breath Easy study (http://www.projecthealthdesign.org/projects/current_projects/breatheasy), patients with asthma used a smartphone application to track ODLs for maintenance and rescue medications, asthma symptoms and triggers, and physical activity and send that data to a dashboard. Because a trusted pathway for ODL data was in place, nurses had an early warning system for patient problems. Two of these reports led to a physician’s reassessment of 2 participants’ diagnoses and a change in diagnosis from asthma to chronic obstructive pulmonary disease. In another case, a nurse observed a pattern suggesting that the patient had confused her maintenance and rescue medications and successfully educated the patient about correct usage. Using ODLs to identify potential triggers for decision support meant that patients received timely adjustments to care, preventing adverse events.
Policy makers can understand these clear stories, and our comments provided additional insight for the ONC on this rule.
In addition to illustrating comments on proposed policy, Project HealthDesign work identified potential issues in transmitting and using patient-generated data safely and efficiently. Project HealthDesign participants were willing to download private information on public computers and were not always aware of the privacy implications or the risk that their information might be retained. We recommended disclosures at point of download, as well as the need to ensure individual risk awareness. We also found that providing electronic access to raw data does not ensure that patients can use the information to manage their health. Project HealthDesign applications provided ODL information on the patient’s terms and with tools to assist in making health decisions, such as visualizations and displays that transformed the data into comprehensive, easily digested information. Patient guidance and training in the use of EHRs and personal health data should be an essential part of policy on patient engagement.
We believe that nurses must not only exert influence on the wording of existing guidelines, but also recommend the best associated methods. We based our comments on experience and used our insight as nurses and patient advocates to identify and address policies that needed to be in step with innovation and user needs. In this way, providing input to policy-making bodies became an imperative of Project HealthDesign.
Nurses have the opportunity to identify these needs first-hand and play a critical role in shaping public policy about HIT. For nursing’s voice to be part of the conversation, we must scan for opportunities to comment on policies such as those mentioned here, whether in the methods used to activate patients, communicate with them, treat them, or protect them.
Once a cause is chosen, enlist the assistance of a partner in practice, such as the state nurses association, medical society, or a grassroots level policy organization devoted to a specific care concern, and use its network to enhance understanding of the surrounding policy. The Web site www.regulations.gov is also a valuable resource for individuals to find current federal policies awaiting comment. Nurses must anchor the unique perspective they hold on the needs of target populations into a personal message on the issue and deliver this message, whether by letters to congressmen or official comments via the regulations.gov Web site.
Nurses occupy a singular position to contribute to policy such as Meaningful Use with key insight into patient welfare. We at Project HealthDesign encourage you to seize these opportunities, for it is crucial that the voices determining policy come from those at the heart of its implementation.
Patti Brennan spent the last 25 years building and evaluating home care computer systems. She recognized early on that policies need to keep pace with the technologies to ensure safe use of information both by patients and for patients.
Sara Koliner is an MPA candidate at the La Follette School of Public Affairs. She has worked to provide a comprehensive policy context to the findings of Project HealthDesign.
© 2013 Wolters Kluwer Health | Lippincott Williams & Wilkins.