Most Patients Don’t Want to Manage Their Own Health Info

Do patients want to manage their own health info?

This is a really big and complicated question.  Mostly because there are 7 billion patients in the world that all have different needs and desires.  That said, there are some important generalities we’ve learned over the years when it comes to patients and their info.

Before I dive into the details and nuances, let’s start by saying that patients have the right to their health data and they should be given access to their health data.  Whether they will use that right or not is a separate question.  There are enough that do want proactive access to their health data and they should be able to access it.  Gatekeepers aren’t a good thing when it comes to patients’ ability to access their health data.  If that’s not enough for you to share the data with patients, there’s also the information blocking law that requires you to give patients access to their health data.

Now, let’s move to the question of whether most patients want access to their health data and whether they want to manage their health info.  This quote from Judy Faulkner from Epic at the HLTH virtual event last year tells one side of the story when it comes to patient’s interest in accessing their health data:

MyChart is available to 165 million patients. Only 0.5% of MyChart users want to manage their own information, and the even that tiny number falls off with time. Patients want their health system to maintain and exchange their records.

The lack of engagement by patients with MyChart is an important data point.  Although, does the lack of engagement mean that patients don’t want to access and manage their own health info?  Plus, it’s worth noting that 0.5% is still 825,000 patients.  Small in the grander scheme of things, but still significant for that nearly 1 million patients.  The real question is why is that number so low.  Do patients just not care?  Is the Epic MyChart solution not accessible?  Is the Epic MyChart features and functions not designed to be useful for patients?  The lack of MyChart usage could be that patients don’t want to manage their health info.  It could also be a lot of other things that Epic could potentially fix.

Turns out, I get pitched the idea of patients managing their health info all the time.  I have dozens of entrepreneurs that reach out to me with the greatest thing since sliced bread.  Here’s how the pitch goes:

Patients are suffering because they and their doctors don’t have accurate health info for the patient.

Redundant tests are costing patients and the health system a lot of money.

Patients lives are at risk because the doctor didn’t have the health info for that patient which would have helped them get the right care.

Simple Solution: Have patients collect their health info in one place.

Patient goes to the office with their health info and care improves.  Lower costs are achieved.  Unicorns appear and celebrate.

Excuse that last bit about the unicorns.  I don’t want to make light of something that really does impact patients.  In fact, it’s something so obvious that we all understand the problem and have seen it.  That’s why dozens of entrepreneurs reach out to me trying to solve the problem.  The problem is clear.  The solution is not.

Whenever I get a pitch like this, I always ask them two main questions:

How are you going to get the data?

How is the patient going to get value from the aggregated data?

As I mentioned, this is a real problem.  I think we all believe that having the right data at the right place can save lives and lower costs.  And we all agree that there are many situations in healthcare where the right data isn’t where it needs to be to improve care and lower costs.  It also seems reasonable to think that the patient is generally the person most invested in their care and has a literal vested interest in making sure the information is shared properly.

Here’s where this starts to fall apart.  How are you going to get all of the patient’s data aggregated?  Does the patient have to do that and upload it to your platform?  We all know how that ends.  A few patients will do it really well, but most will just stop before they really even get started.  They don’t know how to navigate the system and will often give up.  There has been some improvements with APIs, Direct Messaging, and other health data sharing options.  Although, it’s still not to the point that a health IT company can just have you log in to each of your doctors (setting aside that you probably forgot your login or didn’t know you had a login) to get all that info.  Maybe you can get a CCDA or similar document, but that’s only a partial view of your health info.  Plus, it doesn’t take into account labs, x-rays, etc that are often stored in other systems or even separate companies.  The point is patients are unlikely to aggregate the info themselves.  Plus, the variety and number of systems that need to be aggregated along with a lack of automated ways to connect and collect that info makes getting all of the data for a patient a daunting (possibly impossible?) task.

To illustrate how hard this is, one of those entrepreneurs that pitched me the above idea was actually paying doctors to provide them patient’s data.  That’s right.  They would pay doctors to share the patient’s data so they could make sure they got the data.  Here’s the shocking part.  Even when they would pay to access the data, they still couldn’t aggregate all the data.  We could argue whether that business model was a good one or not, but it illustrates just how hard it is to aggregate patient data.  Let alone, to aggregate ALL of a patient’s data.

Setting aside the issue of trying to aggregate the data for a patient.  Let’s assume for a minute that you are able to aggregate the full longitudinal record for the patient.  Maybe APIs progress so that all of the data is easily accessed across hundreds of systems and the patient now has a beautiful record with all of the right info for them.  Now you have to answer the challenging question of what value does the patient get from the aggregated data?  Unfortunately, just having the data doesn’t provide value necessarily.

Let’s use the example of a visit to the doctor.  On the surface, it makes sense that a doctor having access to your data could help them do a better job of treating you.  Unfortunately, the patient walking into a doctors office with their full health record is then presented with the same forms from the front desk as everyone else that they have to fill out in the waiting room (or possibly at home now).  I guess there’s some partial benefit to be able to look at your full health history as you fill out those forms, but mostly that just leaves a patient upset that they have to fill out the same paperwork again which won’t even have their full health information.  The problem here is that there’s no interface for an application that contains your full health history to share that full health history in a usable fashion with the doctor’s EHR.  Plus, the doctor likes their own forms that ask for the information the way they want to see it.  Trying to create an integration that would solve this problem is daunting to say the least. There are ~300 EHR vendors and each doctor has implemented their EHR in different ways.

Plus, let’s say you do solve the problem of interfacing your full digital health record with the doctor’s EHR, what does the doctor do then?  Will the doctor have time in the 15 min visit to really review your full health record?  Probably not if you’re a chronic condition that has a long health history.  Yes, there are some situations out there where the doctor will take the time and go through your full record, but that’s more the exception than the rule.  Assuming the EHR integration with your full patient record is more than pulling in a PDF of that record, it might be stored in granular EHR fields that will trigger the appropriate clinical decision support, but now you’re starting to understand the complexity of the problem.  As you can see, making your experience in the doctors office better because you have your full aggregated health history is a tough challenge.

What about getting value outside of the medical office?  Couldn’t all that aggregated health data be turned into something useful for the patient?  It definitely could, but I just haven’t seen anyone do it yet.

Should we just give up?

I’m sure after reading the above, you might be wondering if these problems will ever be solved.  I’ll admit that I’m not sure on some of them.  I am skeptical that we’ll ever have a full longitudinal health record for a patient.  Given the complexity and number of data sources, it’s just hard for me to see this ever happening.  However, health data sharing and access to health data has gotten so much better.  So, we do have access to a lot of data.  Can we turn this incomplete, but still valuable data into something useful for patients?  I think so.  The reality in healthcare is that doctors do this every day.  They have to treat the patient with incomplete information.  It’s the nature of healthcare.  Can we apply this to partial data on a patient and make an impact for good?  Absolutely.

Are patients going to be the ones managing all this data?  In most cases, I don’t think so.  You’ll have a few outliers that do this well and some patient advocates that do this well for patients.  However, the vast majority of patients aren’t going to do this.  Even many chronic patients are in denial and aren’t motivated to do this.  That said, we’re going to see health IT companies who do the aggregation for the patients.  I’m confident that they’ll largely automate access to some of a patient’s health data.  Then, they’ll be able to take slices of that data and turn it into something useful for the patient.  This will just be done with partial data and without much effort from the patient.

If you’re a company that’s doing this, I’d love to hear from you.  What data are you able to access consistently?  And how do you turn that data into value for the patient in an automated way for the patient?  Those are the two questions we should be asking ourselves.  I think it’s a mistake to ask how we can aggregate all a patient’s health info so the patient can use and manage it.

About the author

John Lynn

John Lynn is the Founder of HealthcareScene.com, a network of leading Healthcare IT resources. The flagship blog, Healthcare IT Today, contains over 13,000 articles with over half of the articles written by John. These EMR and Healthcare IT related articles have been viewed over 20 million times.

John manages Healthcare IT Central, the leading career Health IT job board. He also organizes the first of its kind conference and community focused on healthcare marketing, Healthcare and IT Marketing Conference, and a healthcare IT conference, EXPO.health, focused on practical healthcare IT innovation. John is an advisor to multiple healthcare IT companies. John is highly involved in social media, and in addition to his blogs can be found on Twitter: @techguy.

6 Comments

  • John, I read your article carefully.
    The title does not reflect reality. Patients do want to be involved and engaged in their medical care. The ONLY way to accomplish this goal is to provide the patient with accurate and complete medical record.

    3 out of 4 patients search the Internet for more info on their medical condition. https://nam.edu/identifying-credible-sources-of-health-information-in-social-media-principles-and-attributes/

    As a patient I have been aggregating my medical records for years. Saved my life when being overseas I face a medical emergency and the local physician was able to instantly view my records in English and translated to the local language. That changed everything!

    If done nationally starting at birth all the way through life until death, we will have a complete lifetime medical record. Invaluable resource using technology for research.

    Yes, vertical data collection.

    The Govt. ONC failed to accomplish any meaningful Interoperability. They had been trying for 2 decades!

    “Patient Mediated Interoperability” can start today!

    For more info:

    https://www.linkedin.com/pulse/universally-accessible-personal-medical-records-robert-gergely-md/

  • John,

    You’ve never liked the idea of patients managing their medical records so I’m not surprised at your column and the fact that you ignore important changes that have taken place.

    The OpenNotes study and ongoing program, and many other studies and initiatives strongly refute your argument as do patient use of portals, and the documented growing demand of younger people to manage their records.

    I agree that widespread adoption of patients controlling their records still requires easier access, but instead of throwing cold water on the idea you might have focused on changes that would make patient control easier.

    You are entitled to your opinion that the glass is half empty but please don’t present it as supported by facts. Thankfully the world is populated with some of us who think we can improve our lot, and then do so. Otherwise we’d still be living in the Dark Ages.

  • Fair enough. I like the idea of patients having access to their medical records. I just don’t believe they’re motivated to do so and it’s hard to get value out of it when they do. I’d love for both of those to change. If I had a chronic illness, I’d manage my medical records, but most don’t. I think the lack of uptake of your solution is illustration of this.

    As the article mentions, once the data flows without issue and once we show the value of that partial data, then it will be adopted widely.

  • Actually, John, our uptake issues aren’t with consumers/patients. They’re with hospital administrators and IT staff who are reluctant to try a different approach to record management and sharing. They are more willing to pursue the government’s approach that doesn’t come close to ensuring a doc can access her patient’s complete at the point of care, than trying a different approach such as our MedKaz, that gives them access to their patient’s records from ALL their providers when and where they need it! BTW I don’t understand why you mock the idea of paying docs to do what you want them to do. Paying incentives is fundamental to our society and economy. That’s what compensation is all about, and it’s the approach we are taking to overcome provider and patient inertia!

  • I don’t see how what I said was mocking the idea of paying docs. I was just illustrating that getting the data is so hard that you even when you pay them to do it, you often still can’t get it. It was making the point of how hard it is to get all the data. It wasn’t meant to mock the idea. I’m all about the right incentives. In fact, the perverse incentives in healthcare are the thing that annoys me the most which likely goes to your point that you’ve found it hard to get providers to work with you.

  • The irony is that a number of clinicians I have spoken with love the fact that they can access a patient’s complete record on their Medkaz, and have said they wish their patients had a MedKaz. But they then say: ” but I’m not the decision maker.” The decision makers, the officers and CIOs, refuse to let them use it for fear it will add to their workload — when in fact it does the opposite: it saves them time with each patient!

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