What stands between you and your health information

Everyone deserves to be paid for their work. This includes physicians. Everyone deserves to understand their health status. This includes patients. But what happens when a patient’s desire to know about their health status conflicts with a physician’s preference to be paid to disclose it?

If you have had any kind of testing outside your doctor’s office, do you have the right to learn the results? Yes, you do. Is it easy to learn? No.

The majority of for-profit laboratories, which excludes those in healthcare facilities like hospitals and other in-patient facilities, now have online services that post lab test results. This usually covers diagnostic blood work and urine tests, most often prescribed to manage medication and chronic health conditions. The same is true for some radiology facilities outside hospitals, but not as commonly.

Some testing companies provide the information at no cost, requiring only that the patient create an online account that is password-protected. Other companies charge an annual fee for access. The websites remind patients to consult with a physician for a thorough understanding of the results.

Some physicians will consult with the patient by telephone or video conference, particularly when the results trigger changes in medications or when they suggest the need for either further investigation or referral to specialty physicians. Other physicians require the patient to visit the doctor in person to discuss the results.

The practice choice is not consistent across the country. What is consistent is that any visit, whether in person or not, triggers a payment to the physician. Across Canada, the average payment to family doctors for such a visit is about $50. True, this is not an out-of-pocket charge to the patient, but it is ultimately paid for by health insurance payments to the various provinces and territories, and by general tax revenues.

How big an issue is this?

There are estimates that over 1.2 million lab tests are done every day in Canada, in and out of hospital. This translates into well over 310 million per year. Let’s estimate that one-third of the tests are done on patients in private laboratories. That reduces the number to some 100 million lab tests per year in Canada. In Ontario alone, private laboratories see over 17 million visitors annually. Most visitors have more than one test per visit.

Not all patients have access to the internet to find their lab results. Not all patients receive out-of-range results that might suggest changes in medication or treatment. And not all patients need the results explained to them. Even if only half the patients require a physician visit to learn or better understand the results, Ontario alone is funding some $425 million annually in physician payments for this purpose.

Could this money be better spent?

Whose data is it?

More importantly, whose health information is it? In Canada, the data belongs to the patient. However, it is the hospital or other healthcare provider that owns the portal where the data is posted. This is a conundrum, or catch-22. It is akin to saying that the money you deposit with a bank is yours, but the bank owns the safe that stores your money and thus you don’t have access to it.

Why do we accept this situation?

For decades, electronic healthcare records have been a hot topic in the conversation of how to fix the Canadian healthcare system. Many attempts have been made to create electronic databases, with few positive outcomes in other than relatively small areas of practice.

Hospitals and physicians’ offices are now creating electronic files to replace the paper records that were once common. The issue is that each hospital or hospital system is creating its own database. This means that a patient who is admitted or has outpatient work done at more than one hospital has more than one record. More importantly, it means that a physician associated with Hospital A or Hospital Group A does not have access to patient records from Hospital B or Hospital Group B.

The same is true for non-hospital-based procedures, whether laboratory or radiology. The records of findings from these procedures are stored in yet other databases. In an ideal world, all records would be interconnected. This would make diagnosis easier and would provide a clearer overall picture of each patient’s health.

Unfortunately, this ideal world does not exist. Why not?

Can the system be fixed?

One reason is that even physicians who can access extensive medical records do not necessarily do so. With patients who have chronic co-morbidities, it could take hours to read through medical histories. Fee-for-service payments from the provinces and territories to physicians are negotiated based on complexity and time. The time is very limited.

AI presents a tremendous opportunity to overcome the time crunch. It could offer programming to summarize the patient’s health records that have a bearing on the diagnosis being investigated. It could trigger questions to find the trend in results for particular conditions. It could search more than one patient record database to obtain relevant results.

Another reason that this ideal situation does not happen is that physicians and patients are both human. Neither group has perfect recall of all the procedures and testing that has taken place. Thus, especially when the patient has visited more than one hospital, hospital group or external diagnostic testing provider, they may not recall the event to advise the physician.

As an example, this author was referred to a specialty physician in the same hospital where she had recently had diagnostic x-rays performed that led to the specialty referral. The results were in the hospital’s electronic patient record. With time constraints, the specialty physician had not looked to find the x-ray results, even though they were pertinent to the referral.

Yet another reason the ideal world is not here is that individual providers are proprietary about their patient data. Confidentiality is crucial. Different providers have different guidelines for accessing records, to both other providers and to patients. Legal ramifications are top of mind and the risk of inappropriate access to patient records is a nightmare that providers do not want to face.

Finally, there is the issue of funding. The expression “who pays the piper calls the tune” is apt here. With little, if any coordination between and among the provinces and territories, even if the federal government were to fund a nationwide health data project, would the lower levels of government agree? Would they start working towards an ideal world for patient healthcare records? Not thus far.

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