Two Sides Of The Coin: A Patient & CIO Make Their Case For Data Access

Two very different people. Two very different viewpoints. One issue that affects everyone.

We’re talking about patient access to data, one of the key components of patient engagement — something nearly every hospital leader considers to be top priority. But how can the industry advance when there is little agreement on what information patients should be able to access, and how?

To shed some light on this, we interviewed two people whose passion in this area can’t be matched: John Halamka, MD, CIO at Beth Israel Deaconess Medical Center, who has been a pioneer in the health IT movement and advocate for standardization; and Dave deBronkart, a cancer patient and blogger who became an activist for healthcare transformation through personal health data rights. In a blog post late last year, Halamka said that patients typically don’t want raw data, but rather, “the tools necessary to assist their navigation through the healthcare process.” And in his experience, “no patient at BIDMC has asked for the CCDA download of their medical record.”

The piece elicited a strong response from deBronkart, also known as e-Patient Dave, who argued that he did, in fact, request his raw data from Beth Israel, but was told it couldn’t be delivered. (Halamka issued a rebuttal, noting that Meaningful Use downloads are available through the patient portal, Patientsite, and that tools are available to “create a download of a patient’s longitudinal record in the CCDA XML format upon request.”

On one side, there’s an activist who believes patients aren’t getting what they need, and on the other, a CIO who believes it’s not quite that simple. Each with his own Wikipedia page (e-Patient Dave and John Halamka) and notable social media following. And so, in the interest of making some headway in this issue and developing a better understanding of two very different positions, we spoke with both of them about the evolution patient engagement has gone through, the biggest challenges patients face, and what they believe the future holds.

 

Q&A With Dave deBronkart & John Halamka, MD

John Halamka, MD, CIO, Beth Israel Deaconess Medical Center

Dave deBronkart, Patient Engagement Activist, Speaker & Blogger

Gamble: Can you provide a brief background on how you became a patient advocate, and why it is so important to you?

deBronkart: I’m not a patient advocate, actually – the work patient advocates do (advocating for specific patients in-hospital or elsewhere) has no overlap with what I do. I consider myself an activist – someone who’s tired of making the case for change and is now saying he’s had it: I want action.

What people call “patient engagement” is part of what we’re demanding. As it happens, I unintentionally became famous because of what happened when I tried to send my medical record from Beth Israel Deaconess to Google Health back in 2009, so it’s become something I’m known for. But that’s a secondary aspect of the bigger question of better helping medicine achieve its potential, through patient-clinician partnerships.

 

Gamble: Talk about the evolution we’ve seen in patient engagement in recent years. What do you think has been the key driver in patients becoming more involved in their care?

Halamka: Fifteen years ago, we offered a portal so that patients could view their data. Today, patients want tools to help them navigate healthcare, including care planning tools, progress dashboards, integration with devices in the home, and mobile enabled patient/doctor messaging. That is why we built BIDMC@home in 2016 (to learn more, visit CareKit).

deBronkart: This is a social movement, which always includes a period of people simply waking up to new possibilities. Certainly, increased access to our health information is enabling engagement. But what usually makes a movement spread rapidly is stories. Two things happened in 2009 that became stories that were retold often. The first was that I discovered erroneous information in my medical record during the Google Health fiasco, which much to my surprise went viral (landing on the front page of the Boston Globe) and led to the realization that patients could have something useful to say — much to the surprise of skeptics in medicine (though no surprise to enlightened docs).

This also was the genesis of the rallying cry, “Gimme My Damn Data,” which now has a music video. We still say this because, much to our frustration, seven years later we’re still being stonewalled. Even at Beth Israel Deaconess, I do not have access to all information — at least not in any practical way. To get at everything, I’d have to manually download every single bit of it, and then find software to combine it. It’s bitter irony that several software companies have told me want to develop that software, but can’t, because there’s no feasible way for them to download it to develop the software.

The second story was the death of Regina Holliday’s husband Fred from cancer, amid horridly abusive treatment by one hospital in particular and poor treatment by others. An important part of her story is that one hospital wouldn’t give him food or pain meds without seeing the previous hospital’s chart. The previous hospital hadn’t offered to send it along, and then they tried to charge her 73 cents per page — and make her wait two weeks. (All of this was happening while her husband was lying in pain in the new hospital.)

Underscoring how cruel medical tradition can be, later that day they gave it to her immediately, and free — but only when she brought a note saying she was getting it for the other hospital. Think about your own loved one in pain, dying, and a hospital basically shrugging and saying “Not our problem,” yet gladly dishing it up free for another hospital. This kind of story leaves people in righteous indignation, as well it should. So it drew attention to questions about why (or why not) patients should be allowed to know what doctors are doing (one aspect of patient engagement), and have a voice in it.

 

Gamble: In your experience, which method do most patients prefer as a way to engage with care providers (eg, through email, through portals, face-to-face)?

Halamka: All of the above. It’s no different than organizing travel — sometimes you use a website, sometimes a mobile app, sometimes a call, sometimes an email, sometimes an in-person meeting. Ideally, these tools add value by making the process simpler.

deBronkart: People are different. All the more reason to just liberate the data, and let app developers go nuts developing lots of ways to view and manage it.

 

Gamble: What are the biggest challenges for CIOs in terms of determining how patients want to engage, particularly when dealing with such diverse needs?

Halamka: There is no magic bullet. About 25 percent of patients want to be the stewards of their own data and manage their processes electronically. Many are happy to delegate the management of their data to someone else — a spouse, a child, a friend. Others believe a doctor should manage everything. We have to support all patient preferences.

 

Gamble: What are the biggest challenges patients face in engaging with healthcare providers and gaining access to the data they need?

deBronkart: Some patients face no problem at all: their providers are entirely modern. Eleven million patients even have access to OpenNotes — they can see not just their blood tests etc., but every word of the doctors’ “notes” in the system. I’m one of those.

Note, though, that merely downloading the notes doesn’t give patients a useful, manageable, comprehensive picture of their case. Far more data (e.g. radiology reports, tumor profiles, comprehensive lab history) is required for that.

Other patients face three recurring problems:

  1. Misinformed providers who to this day don’t realize it’s the patient’s right to get their data (not to mention that it’s the morally right thing to do)
  2. Misinformation about HIPAA — some providers are so misinformed they think HIPAA says they’re not allowed to give patients the data, which is precisely backwards;
  3. Providers who are either trying to keep the patient from taking their business elsewhere, or simply trying to squeeze more money out of people in need.

I hear, too, that some providers drag their feet because they know there can be downright false information in the record, inserted to increase how much they can charge insurance. Yes, plain old insurance fraud — or so I’ve heard. There’s evidence of that in my own story.

 

Gamble: How can CIOs and other leaders seek to get a better grasp of what patients want?

Halamka: It’s important to talk to patient advocates about their needs. BIDMC has a 30-member patient advisory council which sets our technology priorities and creates our policies.

 

Gamble: What are your thoughts on the gap between what patients want (whether it’s access to certain data sets or all of their data) and what healthcare organizations can realistically deliver?

Halamka: BIDMC has offered transparent access to all data, including notes, for many years. However, there are a few built-in delays so that clinicians can speak to patients about bad news before they read about it on a website or app. My wife, when diagnosed with breast cancer, didn’t want any delays and asked me, as one of her clinicians, to share data immediately. It’s challenging to create one policy for data sharing given the diversity of patient preferences.

 

Gamble: Do you think healthcare leaders fully grasp the frustration patients feel in not having all of their data stored in one location where it can be easily accessed?

deBronkart: Certainly some do! Some are very patient-empowering. But without cooperation from providers and system vendors, it’s hard to get anywhere. My PCP, Dr. Danny Sands, is on the “liberation” side, as are numerous physician members of our Society for Participatory Medicine. In Washington many have argued the patient’s side in regulatory debates, and key leaders like Bob Wachter and Harlan Krumholz are quite outspoken.

But many others either don’t know or don’t care about families’ frustration.

 

Gamble: How do you think this can be addressed?

deBronkart: There are two separate issues. Providers who simply don’t know can be taught. But ones who don’t want to know, or ones who say “Try and make me,” are not going to be swayed by education (they already haven’t been), so it will take enforcement. And that means more government spending, which hasn’t been going well.

 

Gamble: How do you believe patient engagement will continue to evolve in the coming years?

Halamka: There will continue to be diverse approaches for many years: websites (portals), apps (such as BIDMC@home), secure messaging and home device integration. Whatever we do, we need to bring value to patients and families. We will continue to learn about patient preferences for many years to come (For more information, read this.)

deBronkart: Like every social movement, the end is inevitable, even if forces of darkness keep trying to roll us backwards. “The arc of history bends toward justice,” as Martin Luther King Jr said. But as I said, it’s an awakening about a relationship, which takes time as it progressively happens on both sides. In the women’s movement 40-60 years ago, women awoke to what they never realized they could ask for, and both women and men learned how to do this “new dance,” as we often call it. And now, doctors and patients need to learn how to think differently and act differently.

 

Gamble: Dr. Halamka, any final thoughts on this issue?

Halamka: Patient and family engagement is a journey. None of us should have the hubris to believe we know what every patient really wants.

 

Gamble: Dave, any more comments on how you’d like to see things change, or what you’d like CIOs to know about this issue?

deBronkart: “The times, they are a-changin,” as Nobel laureate Bob Dylan sang when I was a teen. As with every liberation movement, it involves giving up some of one’s current power, in the name of the greater good that will result.

This greater good is no laughing matter: did you know 80 percent of medical records contain mistakes? How can any doctor perform their best if the chart they look at is undependable? And yet, who would ask a hospital to stop what it’s doing and proofread every chart? And who could spot mistakes from years ago, anyway?

The answer is that the patient can. Not all patients and families want to get involved, but if someone wants to, on what moral and ethical grounds could we say, “That’s none of your business?”

My advice to those who don’t want change? Dylan again, from the same song: “Your old road is rapidly aging. Please get out of the new one if you can’t lend a hand.” And one more line: “He who gets hurt will be he who has stalled.”

All we’re asking for is the chant at the end of my TED Talk and the title of my book — which was coauthored by Dr. Sands — “Let Patients Help.” And to do that, we must have the data.

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