Addressing the Unfair Health Information Burden on Caregivers and Patients

Restoring balance, equity, and trust between clinicians, caregivers, and patients in the year ahead

One friend saved her radiology images on a disc and carried it by hand to her oncology consult. Another carefully documented her elderly mom’s medications and posted it on the fridge — always at the ready for the next trip to the emergency room. Yet another took a trip down to the health records department in the basement of the hospital as her dying husband was transferred, paying 73 cents a page to be sure the new doctors would have access to his full health history. A fourth friend once pulled out her phone to show me the notes she had taken on her dying husband’s care — treatments, symptoms and medications — vigilant to help his care team avoid medical errors.

Recently, both my mother and stepfather fell ill. Like my friends before me, we shepherded records between hospital, skilled nursing facility, and community doctors. It is an anxious task. What if I forget to share a key insight, medication, or fact? How would the omission affect their treatment? Caring for family members in health distress is demanding work. If we are also the information conduit, it is completely overwhelming.

While we can all agree that we have a right to our health records, no one should carry the heavy weight and anxiety of wondering if clinicians have a full view of the patient — our own beloved family member or friend — before them. When doctors and hospitals fail to share health information to support patient care, patients and their caregivers pick up the slack. They have no other choice. 

Today, much discussion centers on price transparency, access to care, and access to personal health information from a patient perspective, but not enough attention is being paid to the unfair health information burden that we continue to ask caregivers, patients, and their families to shoulder — patients like my mother and stepfather.

We’ve made great strides in health record sharing and turning data into actionable information. And yet my caregiving friends — along with 44 million other caregivers in the U.S. — are still documenting, storing, and sharing their records. Because they don’t — they can’t — trust their provider organizations and the clinicians who work for them to have access to their complete health history or to routinely consult it if they do. Instead, caregivers and patients must carry this burden and go into hyperdrive in times of health crisis, acting as protector and communicator of each bit of health information.

Change is needed. Healthcare purchasers and health plans must invest in trusted data networks that can bring together the full picture of a patient’s health from both claims and clinical records. Providers should be reimbursed for the time needed to digest and sort patient records and establish one clinical lead to gather and be a source of “truth” for each individual patient. And for real change to happen, clinicians must also step up and demand access to a 360-degree view of every one of their patients and adopt “informed care” as the standard of practice. Every repeat health history a patient fills out on a clipboard must be seen as a failure. Only then will we restore balance, equity, and trust between clinicians, caregivers, and patients.

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