The NIH Clinical Center (CC) is a biomedical research hospital and the delivery setting for NIH intramural clinical research protocols. The hospital contains 200 inpatient beds, 93 day hospital stations, 15 outpatient care clinics, and more than 1,600 research laboratories. The CC admits patients from all over the world for clinical trials and natural history studies and provides hospital services-based support for 17 of the 27 Institutes and Centers (ICs) of the NIH Intramural Research Program. This large portfolio of research studies requires an acute focus on patient safety, timely and effective clinical care, and thorough clinical and research documentation. To support these patient care and research activities, the NIH utilizes an electronic health record (EHR) solution called the Clinical Research Information System (CRIS). The CC also utilizes a patient portal to ensure patients have access to information from their EHRs.
The CC’s unique, clinical research environment provides support for research participants (patients) from across the globe. Many of these patients have rare, life-threatening illnesses, conditions, and diseases. These patients have great knowledge about their diseases, often seeking out care from a variety of healthcare organizations. CC patients often travel long distances seeking help, often as their last hope when dealing with these very rare diseases or debilitating chronic conditions. They have a history of having many medical procedures and testing completed with a high volume of results to keep track of and monitor. They want to be knowledgeable about their health status and be able to access medical information and results quickly and easily.
Patient Portal Background
The CC first implemented a patient portal in 2013. The system provided basic functionality through a secure website with access to some results, few documents, and links to basic information about the CC. The user interface presented challenges to patients, and there was no ability for patients to electronically message providers nor view appointments. In 2017, the CC moved to a personal health record (PHR) model where patients at the CC could access their EHRs from the CC as well as other organizations that may be using the same portal application. The new portal provided an improved user interface, secure messaging capability, access through a mobile application, and other basic functionality.
In 2019, the CC moved to OpenNotes® to enhance patient engagement; help patients remember important information regarding care transitions, care plans, and important next steps or testing; help empower patients to be active partners in the research and clinical care processes; and improve overall quality and safety of care. The CC shares all providers’ notes for both inpatient admissions and ambulatory visits, along with many other health care providers’ notes. Results are sent to the portal immediately once finalized, except for imaging results, which are sent automatically at 72 hours post-finalization, and pathology results, which are sent manually by healthcare providers.
Irizarry, et al.1 identifies that through the support of tools such as patient portals, organizations show improvement in health outcomes and reduced healthcare costs. Such portals have become a quick, easy way for patients to access critical health information as well as an important tool for patients and providers to quickly communicate electronically through secure messaging.
Approximately 65 percent of CC patients who were sent portal invitations have accepted and connected to their CC electronic health record. The CC provides technical support for its portal through a complement of on-site staff and federal contractors rather than support through the vendor. The support staff are available during normal business hours. Technical support staff visit patient care areas in person to assist patients with account creation and connection, as well. The CC attributes its high connection rate with the support across the organization from providers to nurses and other healthcare providers who ensure patients are aware of the portal availability.
The CC moved to a PHR model to ensure patients had the ability to connect to other care providers who used the same portal application through a single account. In addition, due to the complex diseases and chronic conditions patients of the CC often deal with, the CC was committed to using a PHR so that patients could manage their own healthcare documents and upload personal items as well (diaries, notes, logs, etc.).
Patient Portal Survey Administration
One month following the 2017 new portal implementation, the CC conducted a survey of CC patients regarding their use of the patient portal. The survey used a modified version of the health information technology (HIT) item set offered by the Consumer Assessment of Healthcare Providers and Systems (CAHPS). A similar survey was conducted again in 2021 to compare datasets and understand the effectiveness of changes made over time, as well as new needs expressed by patients.
The CC received 8,855 responses from the 2021 survey. Of the respondents, a little over half of the respondents (50.9 percent) indicated that they used the portal for three or more years. Sixty-one percent of respondents indicated that they used the portal in the past year to review lab results compared to 67.6 percent in 2017. Just over 46 percent of respondents used the portal over the past year to review visit notes compared to 11.8 percent in 2017. Approximately 80 percent of patients indicated lab results were always or usually presented in a way that was easy to understand. Similarly, 86 percent of patients found visit notes were always or usually written in a way that was easy to understand.
In addition to these discrete data, open text comments from the survey were reviewed. Overwhelmingly, of those respondents who included comments, the majority indicated they would appreciate the ability to group results by type, review trends of specific results over time, download results as a .csv or Microsoft Excel file, and flag results as desired. Respondents also desired functionality specific to the NIH care environment such as the ability to renew patient identification cards, upload external documents for viewing by NIH care teams, links to NIH clinical research trials, and access to the mobile application through international locations. Other items respondents commented on included improvements to the secure messaging functionality and links to published information regarding research studies.
Analysis of Survey Results
It is not surprising that many respondents commented on the desire to have improved functionality related to the review and analysis of results presented in the patient portal. Many CC patients have a high health literacy given the long-term diseases and conditions they often struggle with. These patients desire the need to critically analyze and track results over time to understand health status. This becomes especially important with participation in clinical research trials. Lyles, et al.2 describes how complex, non-user-friendly patient portal interfaces discourage repeated access by users and that with improvements in this area with enhanced graphical representations of medical information, there would likely be improved patient adoption and satisfaction.
Secure messaging is known functionality that is highly desired by patients. This type of functionality provides a convenient, secure mechanism for patients to reach members of their care team quickly. The CC’s patient portal includes secure messaging functionality. Though, initially, providers anticipated that this type of functionality would create additional work for them, they now see that it can save time and improve patient engagement, as patients desire to understand information presented through results and documents in the patient portal. Like many secure messaging applications, the CC’s application supports functionality where providers can designate another member of the care team to triage messages and respond to those questions; they are capable of answering while forwarding those that require other intervention or response to the provider initially addressed. Healthcare organizations with secure messaging applications must ensure that policies are enforced regarding the timely responses to ensure the system is effective.
Although many NIH patients were knowledgeable about their disease or condition, there was a theme in comments provided by respondents who frequently read visit notes in the portal. They desired the ability to have medical terms described using layman’s terms. The language included in visit notes were often not understood or confusing. Although the CC had conducted education for providers regarding how to write notes that would be comprehensible by patients reading them as well as medically accurate and complete, clearly patients had challenges interpreting them. Wildenbos, et al.3 proposed that as patients struggle to understand medical terminology, healthcare organizations may consider functionality where artificial intelligence can support the translation of medical terminology into layman’s terms. This would require significant analysis and review to ensure accuracy and patient understanding of care plans.
Finally, a significant number of patient survey comment responses included the desire to upload information from outside sources (visit notes, diagnostic test results, etc.) through the portal for viewing by NIH clinicians. While this can be particularly helpful when patients have complex medical conditions where they have received care through multiple other healthcare organizations, it can also present other challenges. Harahap, et al.4 asserts that information uploaded to patient portals could present challenges with being inaccurate or outdated. Such functionality would require careful analysis and organizational policy with standardization of patient-provided information to ensure data quality that would support safe medical decision-making and treatment plans.
Following analysis of these informative patient portal survey results, the CC plans to consider additional functionality to address some key missing components. For many clinical research trials, family history is important. The CC currently has a method of compiling family history and creating pedigree charts within the electronic health record. The next step is to have patients initiate the pedigree by providing important family history through the patient portal. This functionality will support the creation of accurate and complete pedigrees where patients are providing information using resources they have access to at home prior to arrival at the facility. Similar functionality that should be supported includes the ability for patients to provide a full medical history through the portal to inform healthcare providers.
The CC has had reports from patients of inaccuracies in visit notes and other documents. With the ability to support accurate note-writing, patient provided information could assist healthcare providers with these challenges while making the process more efficient.
Patient education plays a great role in patient engagement and healthcare outcomes. Patients must have access to healthcare education documents to ensure care plan compliance. This is critically important in clinical research trials. The CC is working on developing a streamlined approach to providing electronic patient education documents through the patient portal. With a robust library of electronic patient education documents written in layman’s terms, the process presents few technical barriers. Patients receive information in hardcopy during their visit and soon will receive the same information through their patient portal account. Harahap, et al.5 supports this and describes how clinicians must ensure patients are provided education documents that are relevant and credible while also enabling the ability to search for information presented within patient portals. Future functionality will include the addition of problems identified by clinicians in the patients’ problem lists. Targeted education documents may then also be linked to these problems as desired.
Finally, the CC collects valuable social determinants of health (SDOH) data within its EHR. This SDOH information is assigned ICD-10 codes by health information management division coding professionals. This area represents an interest for many clinical research study teams and can provide great insight into their research participant population or what groups may be targeted. Collection of SDOH data may be another valuable piece of information that could be collected through the patient portal prior to the patient’s arrival at the CC through electronic questionnaires sent to patients prior to scheduled appointments and inpatient admissions. Access and analysis of SDOH data would also support increasing health equity by ensuring patients have access to resources, both technological and community healthcare support. Patients with particularly challenging healthcare issues will benefit most from the use of a well-structured, complete patient portal with information about their specific conditions.6 Lyles, et al.7 goes on to explain that portals may be used to gather information related to patients’ technological skills, digital health literacy, and access to technology in order to ensure those who need it most have access to necessary medical information and resources.
Patient portals have advanced significantly with improved functionality and ease of use. They are an invaluable tool for patients with a strong desire and need to review, collect, and analyze healthcare information and diagnostic test results, particularly those who have complex or long-term health conditions or diseases. Yet, with great advancements over the past decade, efforts must continue to focus on improvements to the user interface, support for access to medical information in layman’s terms, functionality to support patient-authored and collected information to support clinicians, and methods for further analysis and results through detailed tracking and trending. Support for patients through robust patient portals will further support patient engagement and ensure they have access to technology and information necessary to support individual and community health.
1. Irizarry T, Shoemake J, Nilsen ML, Czaja S, Beach S, DeVito Dabbs. “A Patient Portals as a Tool for Health Care Engagement: A Mixed-Method Study of Older Adults With Varying Levels of Health Literacy and Prior Patient Portal Use.” J Med Internet Res 2017;19(3):e99
2. Lyles, Courtney R., Eugene C. Nelson, Susan Frampton, Patricia C. Dykes, Anupama G. Cemballi, and Urmimala Sarkar. “Using Electronic Health Record Portals to Improve Patient Engagement: Research Priorities and Best Practices.” Annals of Internal Medicine 172, no. 11_Supplement (2020). https://doi.org/10.7326/m19-0876.
3. Wildenbos, Gaby Anne, Frank Horenberg, Monique Jaspers, Linda Peute, and Danielle Sent. “How Do Patients Value and Prioritize Patient Portal Functionalities and Usage Factors? A Conjoint Analysis Study with Chronically Ill Patients.” BMC Medical Informatics and Decision Making 18, no. 1 (2018). https://doi.org/10.1186/s12911-018-0708-5.
4. Harahap NC, Handayani PW, Hidayanto AN. “Functionalities and Issues in the Implementation of Personal Health Records: Systematic Review.” J Med Internet Res 2021;23(7):e26236
6. Lyles, Courtney R. 2020.
Patricia Coffey (firstname.lastname@example.org) is the chief health information officer at the National Institutes of Health Clinical Center.
Marisa S. Owens (email@example.com) is the assistant chief for patient engagement and system integration at the National Institutes of Health Clinical Center.
Minnie Raju (firstname.lastname@example.org) is the clinical documentation and nursing liaison supervisor at the National Institutes of Health Clinical Center.
Jon W. McKeeby (email@example.com) is the chief information officer at the National Institutes of Health Clinical Center.
For additional support on using technology to help those with complex issues, check out the AHIMA webinar “Care Beyond the Specialist Clinic … Using Technology.”