I noticed this last week:
Most Patients Don’t Want to Manage Their Own Health Info
July 20, 2021
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.
Lots more here:
There is also this:
Is the 'Open Notes' Rule as Good in Practice as It Is in Theory?
— New rule gets mixed reviews as to how well it's improving patient care
Earlier this year, a federal rule that requires clinical information such as doctors' notes and lab and imaging results to be made immediately available to patients took effect. A little more than 3 months out from implementation, there are mixed reviews as to how well the so-called 'Open Notes' rule is actually improving patient care.
Patient advocates and even many physicians have supported the concept of electronic health information in real-time, and say the rule is a first step toward dramatically improving the overall healthcare experience and can help lower the cost of care over time. But even proponents of the rule note that there are potential pitfalls, such as sensitive information reaching patients before their doctors have a chance to deliver and explain it.
Others say there's bound to be a learning curve, and that feedback from patients and physicians needs to be documented and should be part of an ongoing conversation with federal officials. In their opinion, while the rule may be good in theory, it's important to determine whether that also holds true in practice.
"Communication of information is essential for our profession and our patients," Joseph Sellers, MD, president of the Medical Society of the State of New York, told MedPage Today. "Having ways to get information to patients as effectively and timely as possible is great, but we have to be careful about unintended consequences."
Physicians' Primary Concern
The criticism Sellers has heard from his medical colleagues centers around instances where patients get health information before physicians are able to help interpret it.
For instance, patients may receive pathology or imaging results electronically, prior to when their doctor is able to communicate with them via a phone call or office appointment.
A patient may find out bad news, and it may have been better for them to hear it first from their doctor, Sellers said. There may also be instances in which the complexity of test results makes them sound alarming, when they're not. Or, there are times when physicians can help break down details that are difficult for the average patient to understand and digest.
"I think that having that relationship between the physician and the patient is so important. It provides reassurance, it provides confidence to patients in the healthcare system," Sellers said.
Eric Schneider, MD, senior vice president for policy and research at The Commonwealth Fund, which supported the Open Notes rule, acknowledged the concern as a possible downside.
Patients may view information that's frightening, Schneider said. That could include finding out about an abnormal mammogram or blood sugar reading that is higher than expected without any contextual information from a physician.
Lots more here:
https://www.medpagetoday.com/special-reports/exclusives/93679
So it seems only very few are interested in accessing a rich and complete record which provides appointments and direct clinician contact. It seems pretty clear there would be even fewer in Australia who would want to access an incomplete, partial, out of data, badly organized document pile that is the national #myHealthRecord!
And even more importantly it seems when you provide detailed interactive timely record access it is not yet clear that it improves clinical outcomes! Time will tell whether the benefits outweigh the problems and costs!
My view – we need to do patient record access properly or not at all – and the #myHR does not fit any sensible definition of ‘doing it properly’! Never has and probably never will!
David.
13 comments:
"Most Patients Don’t Want to Manage Their Own Health Info"
This is a surprise?
Managing data is the biggest problem with any health record system. Hospitals, GPs & specialists all have a need to maintain data in their systems and they will pay the overhead.
Patients? Most couldn't give damn about their health never mind their health data.
MyHR is a white elephant.
I think it's better to characterise this as 'the percentage of patients that find access to their data useful" is very small. But for the patients that have an uncertain or contested diagnosis, they very much want access to their own data, it's very important and potentially life-changing. This is also a politically relevant interest group. So the mere fact that most patients aren't interested doesn't mean that there's no value.
There's another group of patients who are highly motivated to access and manage their health data, and that's the set of patients who become aware that their record contains wrong data that is driving the care decisions. This is also a very politically relevant group, though my impression is that due to differences in clinical practice, it's must less important in Australia than in USA.
There's another group who would be interested in getting their data too - a much larger group, and that's the set of patients who can receive personal services directly because they have their own record. That can't happen right now in most countries - too many practical and legal difficulties, but I think it's the long term direction we should go. Getting people their data is a precondition for this. But many many other changes are needed before it becomes practical, and until it does, having access to your data is basically useless (except for the special interest group above)
I think that the MyHR is going in the right direction strategically, but it died a death of a thousand paper cuts, and the outcome has set the development of personal health back in this country. I'm not convinced that this wasn't a goal of the MyHR for some of it's supporters (though it certainly wasn't the goal for the NEHTA team I was part of, who *tried*, however flawed it was)
A foreseeable issue for that cohort ‘ set of patients who become aware that their record contains wrong data that is driving the care decisions’ is that the digital space is hard to sanitise data from, you might clean up the immediate systems, but then secondary systems like the can pollute again.
These are all reasonable points you make, Grahame, and 10-15 year's ago; the PCeHR looked like a viable option to resolve many barriers. In today's world is seems out of place. I think some want interoperability everywhere but build exchanges, I still don't see a paper that outlines where want to see interoperable happen and the priority.
Agree with the Nehta sentiments.
Reasonable assumptions Grahame, certainly able to elevate the conversation above the elephant in the room, and corners no stakeholder into an inescapable position.
I assume this marks the commencement of a new “please sir can we have some more” campaign by the ADHA and its fresh-faced executive managers?
Sunset booked, white steeds fed and watered and waiting - hi-ho silver here comes and ADHA cavalry.
9:39AM, perhaps the four-horse persons of the (apologist) (Apocalypse) (insert other)
Sarah Conner - you can correctly assume the summer Carnival will be on the road shortly. Brought to you by the flavour of the moment KPMG
Interesting how those who play with data believe we all want to play with data. I see data a bit like my fruit trees. Just because I don't have a massive wall around my house does not mean you can come in a pick the fruit willy-nilly without consent. It is theft plain and simple.
T.38
Not a good analogy. You give your data to them so they can do their job but they then misuse it and give it to others.
You give your data to them??? If you mean the Federal Department of Health, then I certainly don’t give them my data, I’m fact I opted out of their little scheme, now thanks to David I find out through some back door with the PHN’s they are nicking it. I do get what T.38 is saying.
"If you mean the Federal Department of Health" No, I don't mean the Federal Department of Health. The people who I go to for healthcare get my data so they can do their job. But they then pass it onto others who misuse it.
If the government wants healthdata so they can make policy they should ask people for it. If research organisations want it to do research - the same.
The government is doing its best to grab as much data as it can - through MyHR, through PHNs and through the ABS and the census - it's one of the new questions, it asks what chronic medical conditions you've got.
Just state who you mean, it might reduce everyone’s data entry.
@12:13pm
Did you not read my comment?
"The people who I go to for healthcare get my data so they can do their job. But they then pass it onto others who misuse it."
The people who need my data should keep it to themselves, otherwise they are party to an invasion of privacy. Giving it to governments without explicit consent is a fraud on the people. Letting governments steal it is even worse.
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