Sharing patient data — with the patients

By Lia Novotny | February 4, 2019


Industries as diverse as banking, insurance, and retail are opening up access for customers to the data collected about them. Those that have impeded access to data are facing pushback. Why should healthcare be on the wrong side of this trend? Geeta Nayyar, M.D., chief healthcare and innovation officer of Femwell Group Health and TopLine MD Health Alliance, one of the largest management services organizations (MSO) in Florida, thinks it shouldn't. Nayyar shared with athenaInsight why she believes patients need to be able to access and understand both the information in their medical records and broader information about the healthcare market in general — and why physicians should be excited to take the leap

Why do you feel so strongly about patients having access to their own health data?

First of all, it's the patient's body, right? It's the patient's health. So the idea that you would get a patient's blood and then not give them the results of that blood work is kind of crazy, if you think about it. When you take your car to the mechanic, the mechanic tells you X, Y, and Z is wrong with the engine and shows you the different parts. You may or may not understand what those things are, but you certainly have access to those reports. And should something go wrong later, you're able to pull those things together and go to a different mechanic. So it's really no different, the idea that we take the patient out of the equation is really what's led to a lot of dysfunction in healthcare and led to bad experiences and bad outcomes for patients.

How does having an informed patient help with treatment and outcomes?

We have data showing that an empowered, educated patient has better outcomes. If a patient understands what hypertension is, why they need to take medication even when they don't have symptoms, that patient is actually going to take that medication. Far too often, patients will come to the doctor's office and say, “I was feeling fine and my blood pressure was fine so I stopped taking my medication." Hypertension is one of the leading causes of mortality and morbidity in this country, but a lot of patients don't understand that it is largely asymptomatic, that you can be asymptomatic for many years until you have a catastrophic stroke, heart attack, or go blind from a TIA.

There are those that will say the patient can't possibly understand their blood work, can't possibly understand the nuances of hypertension. And that is exactly why they go to the doctor. But the more patients can know, the savvier it makes them — including Googling and researching on their own. And healthcare's no different from any other industry where if you know what you're buying, know the service you're getting, you're going to be a lot more engaged, a lot more attuned, and do a lot better at being a partner with your doctor and following through on your care plan.

How does data transparency help healthcare in general?

I think increased transparency across the board, for everything from patient education to pricing to online reviews, should be the goal. In retail, we never ask, “Should you know what you're buying? Should you know what the cost of that would be somewhere else? Should you have access to what that product does for you?" The answer to similar questions in healthcare should be a resounding "Yes!" Healthcare shouldn't be a black box — that's a big part of why outcomes are so terrible.

How do you respond to physicians who are reluctant to open the medical record up to their patients?

I actually do understand this perspective. There are certain things in the medical record that could confuse someone or hurt someone's feelings — like language around mental health conditions. And you run the risk that a patient might be offended and not come back — even if it was clinically accurate. Like the word "obese." There is a clinical definition for it, but it means something else in the rest of society. This is a valid concern for physicians.

For me, it comes back to physician/patient partnership. The more you partner with your patient, the more manageable these things become. Often these things are not as big as we make them. You can and should have the conversation with your patient, and say, “Look, you are very overweight, your BMI is such-and-such and I really need you to lose weight. This is something we need to work on together, so let's talk about your diet and your lifestyle." Then there are no surprises for the patient lurking in the medical record.

The challenge is that it's so hard to build that kind of relationship when you only get to see a patient for eight to 10 minutes, once a year or every six months. There are valid concerns on both parts. I wouldn't say there's an easy solution — otherwise we would have found it already. But, in general, I err on the side of transparency.

How can technology support the physician/patient relationship, not hinder it?

When we first rolled out an EHR, I suddenly started getting so many new patients, patients who had seen my partners for years. I informally polled them, and do you know what they told me? They said, “Dr. X doesn't look me in the eyes anymore ever since you got that electronic record thing. You still look me in the eye." It was a simple workflow thing — as one of the younger, more tech-savvy physicians, I would type sideways and always look at my patient, just like when we charted on paper. No one wants to be told they have cancer, diabetes, or lupus by someone looking down at the space key. That's why we always need to keep the patient in mind as part of EHR design and training.

Beyond that, I think there's a big role for technology in terms of clinical decision support, especially with artificial intelligence. There's certainly a human factor that can never be replaced. But if a computer system and an AI bot can pull together a differential diagnosis from chest pains, shortness of breath, fever, joint pain in two seconds, why not consider that diagnosis? Why not look at what the top treatment plans for that would be? It's only going to augment my clinical decision-making.

But we always have to remember, medicine is a people business; adding any piece of technology into that relationship has to be really well thought out from all angles — patient and physician. That's how physicians and robots can be good bedfellows.

Lia Novotny is a Contributing Editor to athenaInsight

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