OP-ED: Digital Tools for Managing Sickle Cell Disease and Other Chronic Illnesses

As a clinical nurse specialist in our ever-evolving technological landscape, I find it important to discuss the need for digital tools in healthcare, particularly for Black patients with chronic conditions like sickle cell disease. Both patients and healthcare providers must embrace digital solutions that can enhance patient care and communication. Black patients, who often experience disparities in healthcare access and outcomes, can especially benefit from the empowerment and improved communication that digital tools offer.

Patient passports

One such tool that I’ve found particularly useful is the patient passport. This is a comprehensive document containing a patient’s medical history, medications, allergies, and specific care instructions. 

For sickle cell patients, a passport might include:

• Current medications and dosages
• Pain management protocols
• Baseline hemoglobin levels
• Information about IV access or ports
• Contact information for their care team
• Personal triggers for pain crisis episodes
• Vaccination schedules

Traditionally, these passports were physical documents that patients carried with them, but now they can be stored digitally—on a phone, a secure flash drive, or integrated into electronic health records (EHRs) via patient portals. For Black patients with SCD, who often face long wait times and skepticism in emergency rooms, a digital passport allows for quicker, more informed treatment, reducing the likelihood of delays or unnecessary pain.

These passports can be lifesavers in emergencies, especially when patients are away from their usual care providers. They offer a quick snapshot of the patient’s condition and needs, allowing for more efficient and personalized care.

Patient portals

Another vital digital tool is the patient portal. I strongly encourage all my patients to utilize their portals actively. It’s a fantastic way to stay engaged with your health care and maintain open lines of communication with your providers.

Secure patient portals are another essential resource, enabling patients to:

• Access their medical records and past visit summaries
• Track lab results and trends in their health
• Request prescription refills and medical equipment
• Communicate directly with their care team
• Schedule telehealth visits, which are particularly beneficial for those facing transportation barriers

For Black patients—who, studies show, are more likely to experience medical bias, delayed pain management, and gaps in care—patient portals offer a direct line of communication to their providers. These tools help patients document symptoms, request pain relief when needed, and advocate for evidence-based treatment plans.

Challenges with digital tools

However, I recognize that there can be challenges in adopting these technologies. Some patients, particularly older ones, may not be as comfortable with digital tools. That’s why I believe it’s crucial for healthcare providers to offer support and guidance. At Johns Hopkins and Vanderbilt, we provided tutorials on using patient portals and accessing telehealth visits. I’ve found that taking the time to demonstrate these tools can significantly increase patient engagement and comfort with technology.

It’s also important to acknowledge that not all patients have equal access to technology. Some may not have computers at home or may share devices with family members. Others might not have email addresses, which are often required for portal access. As healthcare providers, we need to be aware of these potential barriers and work to find solutions, such as providing access to computers in clinics or helping patients set up email accounts.

The integration of digital patient passports and patient portals represents a major step toward equitable, efficient, and patient-centered care for those with sickle cell disease. By leveraging these tools, Black patients can take a more active role in managing their health, improving communication with providers, and ensuring they receive timely, appropriate care.

Digital solutions like these must be designed with accessibility and cultural competency in mind. As healthcare providers, we must continue to support our patients in adopting these tools—not just as a convenience, but as a necessity for better health outcomes.

Dr. Brenda Merriweather is a Clinical Nurse Specialist who recently earned her Doctorate of Nursing Practice from Walden University. With a deep passion for improving care for individuals with Sickle Cell Disease, she has held several key roles in prominent healthcare institutions, including Baptist Health System, Vanderbilt University Medical Center, Johns Hopkins University, and the National Institutes of Health.

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