The Digital Divide Within
Lack of interoperability, HIPAA misunderstandings, and COVID-19 No Visitor Policies have created an overwhelming digital divide within the traditional four walls of medicine across the nation.
I’m looking at you: “innovative, award-winning, world-class, transformative, patient-centered” health care delivery organizations.
Patients who are in the hospital in critical care situations are unable to access their medical information and records in real-time. Their primary carepartners, families, and advocates have been prohibited from the bedside due to COVID-19 No Visitor Policies, leading to lack of communication, breakdowns in trust, and uninformed decision making.
When patients are in critical condition, i.e., sedated on a ventilator, on life support, in a medically induced coma, or recovering from surgery, their primary carepartners desperately ask the following questions:
- Why can’t I see the records that the doctors, nurses, and care coordinators see?
- Why are strangers (doctors, nurses, residents, physician assistants, discharge planners) making decisions about my loved one’s care without letting me see the same information and including me?
- I’m the point person or designated personal representative for the patient. Why can’t I see the records that have been generated thus far? I know they have electronically available results.
- No one is giving me updates. Is my loved one getting worse? Are they dying? I need to see the records..
Most hospitals don’t give access to medical records until well after discharge.Patients often lay in their hospital beds, watching as doctors and nurses carefully review information about them and their current health situation on computer monitors, laptops, and smart devices. Carepartners helplessly wait at the bedside or are home waiting for the phone to ring with an update, with no electronic access to real-time information.
We frequently acknowledge that there is a digital divide in many rural and marginalized communities. Yet, we never recognize the digital divide we have created in every hospital, cancer center, and health care delivery organization, where patients and their families do not have access to real-time health information that is the driving force of potentially life and death care decision making. Patients and carepartners are literally on the outside looking in hopes someone will share even a crumb of information.
This is a significant barrier in critical care and emergencies, in patients who are deteriorating and require emergency care, such as in COVID-19, and in making end-of-life care decisions, where patients do not have months or weeks, but rather hours and moments to make a decision.
These patients, carepartners, and family members may not have any access to the latest information and have been told they have to fill out a formal records request (and wait up to 30 days, if they are lucky).
These carepartners don’t want a copy of the patient’s records. They want to see the most recent and relevant results and findings guiding clinical decision-making to answer questions and make informed, educated decisions about their loved ones’ care. In some cases, they want to see records to see if life-support should be terminated, ventilators removed, or a risky surgery pursued.
In these critical care situations, it is unacceptable that health care delivery organizations withhold access to information, suggest people seek a formal medical records request, and wait up to 30 days as per HIPAA (right now), when the information is readily available electronically often footsteps away on their care teams computer or smart device screen.
The current status quo leads to significant trauma, breakdowns in trust, and hostage bargaining syndrome (HBS). HBS due to lack of access to pertinent information results in patients and carepartners not being equipped to ask questions, unable to discuss potential concerns, errors, or omissions in care, as well as exacerbating feelings of anxiety and fear of being labeled as a burden or difficult for fear that it could negatively impact the level of care the patient receives.
We know that HIPAA permits, though does not require covered entities and hospitals to share information in records during a care encounter that pertains to a patient’s care with carepartners and family members. This includes any person advocating for the patient’s care and safety, so long as the patient has not openly objected or specified otherwise.
While this is permitted as per HIPAA, it is far from routine in everyday clinical practice. This needs to change to do right by the patient.
Yours in Unblocking Health,