Perspectives on Patient Access to Medical Records in Rheumatology


With the digitalization of medical records, electronic health records (EHRs) have become the primary source of data relating to patient health status and/or the delivery of healthcare routinely collected from various sources. Medical practices usually outsource medical transcription to maintain accurate patient records and facilitate communication among healthcare professionals.

A chronic autoimmune disease, rheumatoid Arthritis (RA) primarily affects the joints. It is characterized by inflammation, pain, swelling, and stiffness in the affected joints. RA can also cause systemic complications, affecting other parts of the body. Regular follow-up is crucial to maintain joint flexibility and manage any symptoms of RA.

A Personal Health Record (PHR) can be created by doctors, patients, medical facilities, pharmacies, and various other sources. The patient maintains control over the PHR. On the other hand, an Electronic Health Record (EHR) is a digital record created and maintained by physicians. Patient access to medical records in rheumatology is a crucial aspect of healthcare as it allows patients to take an active role in managing their condition.

Under federal rules passed under the 21st Century Cures Act that took effect on October 6, 2022, patients got unfettered access to their full health records in digital format. When patients have easy and timely access to their medical records, it can lead to improved patient outcomes, increased patient engagement, and better collaboration between patients and healthcare providers. Let’s look at some perspectives on patient access to medical records in rheumatology, the advantages, challenges, and best practices.

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Benefits of Personal Health Records

Rheumatologists need to know a wealth of information to provide the best care to patients. In an article published in The Rheumatologist in 2014, providers expressed their support for patient access to personal health records (PHRs) in rheumatology, saying that it made the patient an active part of the care team. With a PHR on an app for a smartphone or tablet, patients can:

  • Document important health information and keep track of vital stats, such as daily calorie counts, blood pressure results and blood sugar measurements.
  • Store photos of joint distortion for rheumatoid arthritis for the rheumatologist to see.
  • Get medication reminders for a daily regimen or monthly biologic infusions, as well as collect other complementary and alternative treatments.
  • Note down activities that worsen their symptoms so they can try to avoid them.
  • Share health information with physicians in other locations when traveling.
  • Allow relatives involved in a family member’s care to easily review relevant clinical information

PHRs also make the patient encounter more efficient and productive, and it ensure that patients get what they needed. PHRs can be either linked to EHRs or stand alone, but linking them is the useful approach

Patient Access to Medical Records in Rheumatology

Patient access to medical records has gained significant attention in modern healthcare as a means to foster patient engagement, facilitate informed decision-making, and promote collaborative care.

Benefits for Patients

In the field of rheumatology, where chronic conditions require ongoing management and communication between patients and providers, granting patients access to their medical records can provide many benefits:

  • Informed decision-making: When patients can access their medical records, it empowers them to actively participate in their healthcare journey. They can review test results, treatment plans, and medication history, which will help them make informed decisions about their treatment options. Studies from the OpenNotes initiative showed that, with access to the medical record, a majority of patients and their caregivers reported better understanding of health conditions, remembered the patient’s care plan, and felt more in control of care.
  • Improved adherence: Patient access to medical records can foster adherence treatment plans. It allows them to better understand the rationale behind prescribed medications and lifestyle recommendations, driving improved adherence and better outcomes.
  • Enhanced communication: Patient access to medical records fosters better communication between patients and rheumatology healthcare providers. Patients can share accurate information about their symptoms and treatment experiences, enabling enabling providers to make more informed decisions.
  • Facilitates getting second opinions: Patients with access to their medical records can easily seek second opinions from other rheumatology specialists or healthcare professionals, leading to more comprehensive and versatile treatment approaches.

Challenges and Considerations

While PHRs and EHR access by patients enhances patient participation in their treatment, increased knowledge and self-management, and better interaction between providers and patients, it comes with certain challenges:

  • Complexity of medical information: Rheumatology records often contain intricate terminology and medical jargon. To enhance accessibility, healthcare providers should present these records in a patient-centric format, along with explanations as needed. The effectiveness of guiding patients in the adoption and utilization of their Personal Health Records (PHRs) may rely on clinicians’ willingness to communicate in clear and simple language. Jann Keenan, an expert in health literacy education and the President of Keenan Group Inc. in Ellicott City, MD, highlighted the significance of this approach in an article published in The Rheumatologist (2014). “Providing easily understandable information within the PHR can reinforce patients’ comprehension of how to utilize and access information beyond the clinical setting,” noted Keenan.
  • Health literacy: Patient health literacy levels vary. It’s important to offer educational resources and support to help patients understand their medical records accurately. The literacy skills required to understand one’s own health information are demanding, Keenan notes. Patients with low health literacy are usually less likely to view lab results, communicate with providers, request medication refills and make medication appointments with patient portals connected to EHRs, according to a 2013 report in the journal Psychology and Aging. According to Keenan, written information that explains PHRs should be at a level that a majority of patients can understand—that’s usually a sixth-grade level or lower – and should avoid jargon, all caps and small font sizes.
  • Patient disabilities: Even with diligent attempts, rheumatology patients may find it challenging to stay abreast of their health information when grappling with fatigue caused by their condition, as pointed out by Keenan.
    Changes in cognitive abilities associated with age, including areas like working memory, reasoning, processing speed, and executive functioning, can impact older patients’ capacity to manage a Personal Health Record (PHR). In some instances, caregivers or family members might need to step in to assist in maintaining PHRs for specific patients.
  • Privacy and security: Maintaining patient privacy and data security is paramount when granting patients access to their medical records. Healthcare providers must implement robust security measures to safeguard sensitive medical information.

Best Practices for Implementing Patient Access to the Medical Record

Implementing patient access to the medical records effectively requires effort on the part of the medical practice. Physicians should offer resources such as plain-language explanations, videos, and tutorials to help patients interpret their medical records effectively. They should regularly update patient records and ensure that test results, treatment plans, and progress notes are promptly available to patients. Rheumatologists should also foster proper communication with patients, and encourage them to seek clarification about their records if needed.  Finally, they should ensure that portals are secure, user-friendly and accessible on various devices so that patients can access their medical records conveniently.

As technology continues to evolve, ensuring secure and user-friendly access to medical records will play an increasingly vital role in modern rheumatology care. Outsourced rheumatology transcription services can play a key role in this practice by ensuring accurate and timely information in EHRs.

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