**Transcript of Cyberseminar**

**QUERI Implementation Seminar**

**Using Clinical Databases and Digital Health Technology to Build a Learning Health System and Patient Centered Care and Support**

**Presenter: John Øvretveit, PhD**

**February 11, 2014**

*This is an unedited transcript of this session. As such, it may contain omissions or errors due to sound quality or misinterpretation. For clarification or verification of any points in the transcript, please refer to the audio version posted at www.hsrd.research.va.gov/cyberseminars/catalog-archive.cfm or contact Debbie Jenkins at Deborah.Jenkins@va.gov.*

*John Øvretveit:*- hosting me, and how much I’ve learned from a tremendous program run here.  Also, a big thanks to Molly and Debbie, who’ve helped put this together.  I’m going to go quite fast.  Let me first introduce what it’s about.  The essential idea is that, as more and more information gets digitalized, there are a whole range of uses.  I’m going to show you three examples.  I’m going to relate this to the idea of the Learning Health System that is being much discussed these days.  Also, I’m going to open up the question of what does research and researchers mean within such an approach?  This isn’t guidance for VA researchers to use registers.  You have a number of databases and registers.  There are a number of people probably listening to this seminar who are much more qualified than me to talk about that.  The VRAC has an excellent guide focuses to this, for those that want to get into that.  

The type was a bit of a complicated one: clinical databases.  Well, essentially it’s lots of different patient data in a databank.  This actually could be one physician’s clinical database, or it could be a whole nation pulling in patients’ data from different physicians or from patients.  The digital health technology, essentially this is anything with a chip in it plus the internet.  Elements of this is the rapid development in software that can collect and analyze and send data in different ways.  Also, visual displays and graphics that help us understand the data.  Also, increasing the body monitors that transmit data real-time.  I’ll talk about that later.  That is the technology.  

Then, the idea is that the Learning Health System, a lot of the recent discussion of Learning Health System is about how we can capitalize on the digital health technology and digitalization of data that is taking place.  Part of this is that it opens up new areas for research.  We can learn about patients from EMRs and a whole range of new types of research.  I’ll talk about that later.  Then, the patient-centered care is about involving the patient in consultations, looking at the patient’s data.  I’ll explain that in the examples.   

Now, presumably, you don’t have these problems in the VA, unconnected providers and under-coordinated care.  Each physician runs their own business and has their own EMR and really doesn’t connect with others.  Although, meaningful use is meant to bring this to another stage, as we move in the next few years.  Especially if we’ve got patients with multiple morbidities, it’s basically a mess.  We sometimes get worried, as we realize we have to repeat our story and tell them what the last physician said or was doing.  You’re obviously going to have suboptimal care.  

Of course, the VA’s different, isn’t it?  I don’t know how—I won’t ask for a poll on this, but I’m assuming that you don’t have this problem in the VA.  It’s easy to access up-to-date patient data at the point of care, and see the different medications the patient’s on, and if there’s a change in medication, so on and so on.  

It may be some of you say, “Well, in theory, but with some patients, we do have similar problems.  It is connected, but it’s not terribly easy to use by a physician or by a patient.  Our patients are not able to actually look at their EMRs and understand or check what’s in there.”

That will take me to another example.  What I’m going to show you here—or just mention—is Amanda Hubbard, who had a impromptable defibrillator.  If Amanda’s heart was beating too fast or too slow, essentially, it would zap to bring it back to normal.  It also had constant data collection.  This device emitted a stream of data every fraction of her heartbeat.  The information she didn’t have access to.  It had to be—she had to be informed about this from a physician.  At a checkup, it was found that the defibrillator was found to be defective.  This is what Amanda said: “If I’d been able to follow my own reports, I would not have walked around for an entire year with a potentially dangerous problem.”  She had to have surgery to have the device *[replaced.]*Essentially, what this is saying is that more and more data from patients, either that they input or the devices send, is being collected.  Often patients don’t have access to that data.  There’s a whole set of issues about privacy.  This is a growing issue with public apps, iPhone and sleep monitoring, who go to third parties in the same way that Facebook and others do.  I’ll come back to some of the privacy issues later.  

The second problem is the underuse of potential—the advent of electronic medical records opens up a whole range of point-of-care prompts and reminders, alerts.  At the moment, they really are underdeveloped to be giving intelligent support for individualized care in different ways.  The potential to scan EMRs, a lot of EMRs to assess risks to predict problems and to encourage best practice is one area for the future.  

Also, various patient assessments that can be done about their state of health or about outcomes from treatments are not being collected and used in the way they could be.  The body monitoring data, there is an exploding stream of data that people haven’t really begun to recognize or put to use.  In some of the examples, I’m going to be talking about that.

One of the issues here is the how do we use the potential.  As we go digital in healthcare, there is a tremendous potential and I think an under-recognition about what can be done, and how best to do it, technically but also in terms of privacy and security issues.  Under-control of personal data.  What’s emerging—and this was one study—is that patients were actually quite concerned about the privacy and security of their health data.  These focus groups said that they should have control over whether and how their data are shared and used.  I put the “their” in inverted comments here.  It is by no means clear who owns these data.  In general, a lot of the cases show that patients do not own these data.  I’ll come back to that later.

Now, however, 75 percent said they want their data to be used to contribute to research, an altruistic, if consent is asked, if they feel they have control.  This was even higher for those patients who are regular social media Facebook-type users.  What I’m saying here is that patients want their data to be used for research, but they want to feel they have control and have some control over it.  I can come back to that later in the HIPAA and other things.

Interestingly, the UK is just introducing—I have a house in the UK, and on my pile of post there is one that says, “Your data and your general practition and hospital records will be used for research.  You have the opportunity to say if you do not wish this to happen.  Otherwise, accept this as notification that your data is now going to be used, de-identified, for research.”  That’s interesting that the UK have taken that approach.  There has been a bit of an outcry about that.  

One of the issues here is about data and security.  Now, these problems that I’ve mentioned, I wonder, are they going to be solved in the three examples that I’m going to show you?  I’m going to show you the Swedish hip implant register.  I’m going to talk about the arthritis register that we run from our unit.  I’ll also talk about the Cincinnati Children’s Partnership Network to open up another area.  I’m going to be asking whether these six challenges or problems are actually solved in any of these approaches, or look like being solved.  

Now, when I look at a new area, I identify a guide for 12-year-olds.  “Modern art a guide for 12-year-olds”.  This here is a guide for 12-year-olds of what I’m going to cover.  It’s a very simple way.  My apologies to even moderately expert folks in the VA, because I think you’ll say, “Oh, ouch.  This isn’t quite right.”  For those who have avoided getting into this area. 

Your clinical data goes to a registered databank.  That databank can give you your data as reminders and alerts.  This is what can happen.  It can also go to your physician or hospital.  That, essentially, is any person who’s authorized, at any time, and all the needed data at the point of care.  Well, that’s all very interesting, but where does the electronic medical record come into this?  It’s a bit like my Facebook webpage.  Well, the register databank isn’t—there are certain similarities, but some differences.  

Your data is also personal body monitoring that’s automatically sent.  If you’ve got a sensor for a heart problem, that’s going in there, diabetes and another issue.  It also is your data that you input on patient-reported outcomes.  For example, I recently had a hip replacement, and I’m chased every six months to put on my scores, in terms of mobility and pain and any problems.  That’s a patient-reported outcome for that procedure.

Now, the physician also inputs your clinical data to the registered databank.  There’s a connection between the individual patient’s EMR and the registered databank.  These are all connecting systems.  It’s that area that I’m going to be talking about.  You’ll need that.  There’s a bit of a background to the examples that we’re going to be looking at.  

This is in words.  Essentially, the EMR feeds the register.  Now, this can be—it can be just the physician’s EMR—sorry, just the physician’s practice with all of his patients on diabetes or with heart failure.  Or it can be a whole nation with lots of EMRs from different systems feeding the register on a particular kind of cancer, for example.  

Now, the EMR also gets registered services, and I’ll explain these in a moment.  One of the approaches here is that, in the meeting between the physician and the patient, the physician can access the register, and the register is actually able to give services which EMRs don’t give, at the moment.  I’ll explain that in the examples.  I’m going to call them smart registers that give feedback to physicians from these massive patient databases.  They can also give feedback and information to patients.  I’ll show you those in examples.

They deliver patient data analyses over time, for an individual patient.  You’ve got all of your history over time, and you can run particular analyses.  At the bottom there, you’ve got the link to the Swedish arthritis register that shows all the different—it’s what’s called a dynamic website, which allows you to put in different variables and get real-time reports on all of the patients in Sweden with X particular prescriptions, and what their outcomes are, or their costs.  You can have a look at that, if you wish.

The first example I’m going to give that illustrates some points is the hip implant registry.  It was started 35 years ago.  The data it has is every single patient who’s had a hip implant in Sweden over 35 years.  It has basics of age, sex, and other basics.  It has the particular procedure, the prosthesis that was implanted, and other treatment data.  It also has clinical outcomes, and it also has patient-reported outcomes.  The patient-reported are probably only in the last ten years or so.  

Now, with all of that flowing in for every hip implant, into a central national database, what it led to is, after a few years, we began to see there were regular reports to orthopedic surgeons.  This was featured at the Swedish Orthopedic Surgeon annual conferences.  After about six, seven, eight years from it starting, you could begin to see the hip implants that were not working well but needed re-operations.  Then, over 15 years, what began to happen was all the physicians started to converge.  Now, in Sweden, there are basically about 6 implants for 90 percent of the hip replacements.  Recently, I had a new hip, and it was one of these six.  In fact, there’s probably about 2 that are 50 percent.  When the surgeon said, “It’ll last you 20 years,” I knew he knew what he was talking about, because they had looked at the data and they’d decided—and also, the procedure that they used for the kind of body shape I am was the right kind of procedure.  That was evidence-based way to put it.  Two standard operations.  

Now, one thing I want to add is this wasn’t because we had incentivized Swedish physicians to do it this way.  It happened voluntarily and gradually because the orthopedic surgeons set up the register.  They decided the data that was going to be input.  They ran an owned register.  It’s only in the last 15 years or so that they’ve begun to get government money to support the registry.  

The early reports showed the evidence.  You began to have these quality improvements without various punishments and financial incentives, just from the data alone, in terms of the credibility of the data.  It’s also led to a lot of research of various types.  This register and the hundred other ones in Sweden are now going to be linked to patient genome profiles.  We’ve got the biobank at the Karolinska.  That also will be the repository when we start doing more sequencing of genomes.  The price is coming down.  It’ll soon be about $400.00, $200.00 for the full sequence.  We will be able to run research and linking with patient data, to be able to predict and also assess different treatments in relation to genomic profiles, which is part of the next ten years’ revolution, which is coming to healthcare and research.

Now, what I was going to show you here was a Boston consulting group.  The Swedish government asked them to do a report on these, because a lot of people were saying, “These are brilliant.  This is the equivalent of the Norwegian oil, the resource you’ve got here in Sweden.  Fantastic things you can do with this.”  This is about talking about the genomic linkages that are coming up.  

Swedish government asked Boston consultant group.  The Boston consultant group said, “Well, for the US, the US could save 2 billion of the 24 billion that the US spends”—this was four years ago—“for replacement repair, if they introduced the system similar to that.”  That was from the report.  There are other registers.  They’re usually treatment- or disease-based.  The diabetes register, 95 percent of all departments in medicine in Sweden contribute to that.  Also, 75 percent of all primary healthcare centers are a part of that program.  

Other Swedish—essentially, this report estimate says, over a ten-year period, for every krona the Swedish invest, there is a ten-krona return.  Again, without talking about the genomic potentials that are opened up.  One of the improvements is the data being public.  They found that both poor- and high-performing departments improved their care.  Those were some of the success factors.  On the references section of these PowerPoints, there are the details on that, if you want.  

Now, as a result of this—actually, three years ago, the Swedish government increased the funding five-fold for these registries.  At the moment, we’re doing an evaluation of how they spent the money, and did they spent it, because it led to a flurry of other people wanting to set up a registry.  We’ve got a whole mix of different registries like this, national clinical databases.  

I’m interested, for you, what is significant about this, and could it work here?  Do you already have something like this in the VA or in the US?  The patient-reported outcomes were a recent part of this, that I think are increasingly important.  Given the stress on patient-centered care and patient-centered care movement, I think that’s important.  

For me, this was really important.  Not only did I know it being Sweden, infection rate was going to be pretty low, but that, essentially, I was going to go through—although they say, “Look, it’s no problem.  You’ll be up in three days and walking,” it wasn’t quite like that.  It wasn’t plain sailing.  At least I knew what I’d been through.  I wouldn’t have to go through this again at 75 or 80, for a new one.  It certainly added to my confidence.  I have benefited, as all Swedish patients over the last few years have benefited from this program.  It did take a few years for the data to build up, for it to begin to influence practice in evidence-based.  As I’ve said, it didn’t need financial incentives.

Now, here’s another one.  This is the second example.  I call it the co-care system, because the data that goes into the register empowers the patient to understand more about their arthritis.  The patient enters their current pain on joints.  There’s basically the picture that would’ve been here, if I could’ve sent it, would be of a iPad with a hand on it.  The patient presses on the joint in the picture to show where the pain is and give their pain score.  They are able regularly to enter data about where they're experiencing pain, and how much pain they’re experiencing.  

What this shows—you can look at the films here, where they talk about the system and their experience of it.  Because what happens is the clinical—this information goes into the clinical database, the patient’s reported outcome, as well as other items.  The clinical database—this one of the smart service, which the register gives—is the physician goes out of their electronic medical record, logs in to the national arthritis registry, and they are then able to show the patient’s data that has been taken out of the EMR into the registry, and then is represented by the registry.  The register also shows a visual display.  Usually the standard display we use is where, over the last year, it will show the pain scores compared to the medications they’re on.  

The patient and the physician can look at the simplified visual display and say, “Why has your pain increased at this point?  I would’ve thought these medications would’ve been working by then, and working well.  Do we need to change the medication?”  The patient can say, “Well, no.  Actually, you don’t because that was when I went on holiday, or that was when I changed my diet, or did this.”  They’re able to have a much more informed discussion about the patient’s experience of pain, and how it’s not just the medication, but it’s also their lifestyle and the medications, and how those mix together in different ways.  The patient can understand much more about it.  It’s actually quite important for the medications, because they’re very hit and miss.  It’s a very crude way of titrating the medications for arthritis, to get the right mix and what works right for them.  This makes it a bit less hit and miss.

Now, you can see where this is going.  With the genomic and other detail, you’ll be able to do personalized medicine and individualized, and get the right mix of medications much more designed for the individual patient.  This is heading in that direction.  You can look at those videos later.

This is a way to show it.  What you’ve got is the patient and the provider interacting in the consultation.  They are both referring to the clinical database, the arthritis register database.  Where we’re going with this is the patient can also connect to other patients with arthritis in their area, or patients like them, to discuss and share.  The register is going to be part of the platform that allows patients to share and exchange with other patients.  I’ll come back to that.

Also, from the clinical database, you can compare each department in Sweden.  The 64-ish departments that are inputting data, you can see which gets the best outcome, or, indeed, with physician gets the best outcome.  You can look at individual physicians, the cost per patient, and the patient outcomes that they’re getting, and say, “Who is the best physician in Sweden?  Who gets the best outcomes for the cost in Sweden?”  We haven’t done that.  I can go into detail of why we’ve shrunk back from what I’m sure the Americans would do there.  Also, you can see how we can connect to the research genomic database.  This system also will give drug alerts of any adverse events.  That is part of how it’s funded.

Now, we’ve been funded by Robert Wood Johnson, their first overseas project.  We’re partnering with Dartmouth to look at transferring our experience to the US.  Our report is going to be out.  I’ve just found part of it, and it’s going to be out in about two months or so.  

One of the questions is—one of the questions we’re answering is there is an element of empowerment of the patient in this, by seeing their data, by inputting their reported outcomes.  The big question is does it work with less literate patients?  Also, would this kind of approach work with patients, for example, with heart disease, diabetes, depression, other patient groups?  That’s one of the things we’re debating and discussing.  There’s very little research on this that we can draw on.  Well, more on that later.

Some of the challenges adopting this in the USA we’re getting.  Our Dartmouth colleagues, Eugene Nelson and colleagues there, are looking at the technical and other issues in adopting this in the USA.  It may be that the VA is already doing something like this.  

Here are some of the points from this example.  I think the key point here is that the register provides a smart service direct to the patient and the physician at the point of care.  One of the points that’s become clear to me is that there are big variations in departments across Sweden about how much they sit down with the patient and discuss these visual displays with them.  Quite a few physicians actually need training and—how shall I put it—an attitude change, to switch their practice in this sort of patient empowerment consulting co-care model, shared decision-making, co-care model.  

The way I put it here is this smart register or register-enabled service enables, but it doesn’t ensure, shared decision-making.  This co-care has more implications, so more on—but what’s interesting is how, as a patient, you can get direct access to our data on the register at home, and you can input your data, and check data through a patient portal system that I can talk about later.  

I need to finish in five minutes or so.  I’ll show you the third example, this from the US.  This is slightly different.  The patient registry on inflammatory bowel disease is part of a national network.  What I’m going to profile here is this idea of a national network, a platform, of which the patient register is part.  You can look that up on the C3N project.  C3N is an internet platform for patients, providers, and researchers to work together.  This is heading towards the learning health system concept that we’ll be getting to.  

Basically, what you’ve got here is a small community of patients with this particular disease.  It’s a community that trusts and knows each other.  That’s why I think it works.  Now, the EMR gives the individual patient data into the register.  You’ve got software that’s monitoring, and you have patient identified within a secure group.  You’ve got patient groups contributing in different ways, and patient-entered data.  

There are precedents.  Some of you may know of the patient-like-me approach.  It’s where you—for example, if you have depression or certain sorts of particular problems, you can join this network.  It’s like a Facebook or patients with different conditions, run by a third party; it’s not run within a system.  You report your systems, and you find patients like you and what treatments they are having, and what their experiences are.  You can contact them and discuss with them.  You can learn—so, this is—we’re bypassing the formal health system to use a shared approach.  

Now, researchers have begun to work with this.  There are a number of publications.  One example is the sclerosis research group.  Really, what I’m saying is, independent from the health system, patients are doing this for themselves, and researchers are connecting with them to study and work with all of these data.  You can look that up.

Now, interestingly, PCORI has picked up on this.  They’ve funded and running 18 what they call patient-powered research networks that’s run and governed by a group of patients.  You can look that up.  There are various health conditions.  They share health information, and they participate in research.  You can explore that, as well.  I think there are—on that one, there are selections for the VA about where to go with this, on their approach.  

One example is the pediatric learning health system that’s funded by PCORI.  This has patients, families, conditions, and researchers.  This is the description of what they do.  The focus of this one is to do what they call provide information about available, reasonable alternatives that will allow patients and families to make informed, shared decisions with their healthcare team.  You could look that up there, as that example.  

The point from the Cincinnati work is that you’ve got a platform.  The register is part of a website forum.  Again, this enables—but it doesn’t ensure—the partnerships.  I think there’s something about this—people with this disease, and the values and close community that may not be there for other patients, diseases, and groups.  One of the big questions that all of these approaches raise is does it only apply to certain patients or certain groups?  

One of the questions is, well, do these three examples solve the problems, and show the way for others, in terms of unconnected providers and under-utilization of data, and issues about control of personal data?  Those are my scores, naught to five, about how well these examples performed in dealing with those issues.  

Now, what I’m going to finish up with—and I’ve only got about two minutes, so I’ll go through this really quickly—is the Learning Health System.  This is what this feeds into.  This is one definition from the Institute of Medicine.  In the references, there are a whole series of Institute of Medicine discussions about the Learning Health System.  Molly has three publications that give you a relatively painless introduction to that, if you wanted to download that.  

This is one of the aims.  90 percent of all clinical decisions will be supported by accurate, timely and up-to-date clinical information, reflect the best available evidence.  I wonder if that—there are elements of this that are common to the VA.  I’m interested about people’s thoughts about the VA and its progress on this, both practitioners and researchers reflections on that.  

Here’s one example of Learning Health System.  Software is running continuously on a set of EMRs.  It will discover possible associations between a number of variables and the later emergence of sepsis, so that you could predict sepsis from early signs in the EMR.  That’s one.

Another one is at a different level.  There’s data that’s being used for communities to do needs assessment.  I do encourage you to look at the Kaiser CHNA data platform.  That’s a dynamic website tool that allows you to run various variables that is fed from data by the federal government, from sensors and other health data in that system.  These are tools for approaches that are beginning to leverage or make use of the data that is there.  

Now, does this mean that those researchers were history?  No, I don’t think so.  First of all, you need evidence from research about what’s effective on which to base decisions.  That’s still going to be there.  As researchers, we increasingly use the EMR and other data from registers, in different ways.  That’s the VRAC side of things.  

With the decision support, I think, as researchers, there’s a big agenda for us to ask practitioners and managers and patients what sort of information they need at different times in their practice or life activities that would help them make more informed decisions.  It also opens up a whole set of issues about research partnerships, as researchers working with practitioners and patients, enabled by these data and enabled by these websites.  

One of the issues is to give the data people need to make evidence-based decisions.  As researchers, we know that this, ideally, would be the aim.  We need a fair agenda of research to develop this sort of—to be making more use of the data that is out there in different ways, in everyday workplace.  

One of the questions for us, as researchers, is what decisions do patients and practitioners have that could be informed by the available data?  It needs researcher to understand data and understand what’s out there, and to think about how to make this available, and present it in a way in which people can use in their busy, everyday life.  Issues about visual display and how to get it there.  Then, to say, actually now, do people use these data that are presented?  Does it lead to better outcomes?  Which is essentially about evaluating the components of the Learning Health System.  

One thing I’m going to leave you with is, well, that’s all very interesting, John, but does this have any implications for me, as a researcher?  Do I need to get some new skills or knowledge about certain things?  I think so.  I’ve had to.  I’m only beginning to wrap my head around what I need to encourage our researchers at the Karolinska to get into, much more so.  I think there is a digital future that is just beginning, and researchers should have a keen role in this.  

We need to access clinical data, just for conventional research.  We need to be much better at doing research on real patients, using registers and electronic medical record data.  We need to know how to access this.  There are a whole set of issues about how we work with operations and VRAC on this, to help develop methods for new types of research that’s going to come from this.  

Two questions I’ll leave you with.  What would make the VA more of a Learning Health System?  What will be different, in five years, if the VA really does start making more use of digital and Learning Health System ideas?  One of the issues here is also issues to do with privacy.  Who owns your data?  I just heard that Debbie just joined Kaiser.  She’s quite impressed by the access she has to the electronic—the HealthConnect.  Is it HealthConnect?  Something like that?  The Kaiser record, and what they’re doing.  I think there are similarities.  One of the issues, also, I think, is VA and Kaiser working together in different ways. 

Anyway, I’ll finish up there.  I’m sorry if I’ve gone over time a bit.  

*Moderator:*No problem.  Thank you very much.  For our attendees that joined us after the top of the hour, if you’d like to submit a question or a comment, you can do so using the Q and A box, located in the upper right-hand corner of your screen.  Just type it into the lower box and then press the speech bubble, and that’ll come right through.  We don’t have any pending questions at this time.

*John Øvretveit:*I’m very interested.  You must have registers a bit like the hip register or the arthritis register.  Essentially, for my own selfish reasons—because we’ll be debating this with Dartmouth and RWJ in a few weeks’ time—my fantasy is that the VA, as it’s quite digitalized, is quite well advanced in this, and my little forays into looking at the VA systems and approaches.  Do you have anything like hip registry or arthritis registry or diabetes registry, either on a regional basis or a national?  How does it work?  Do you utilize your registries for randomized—

*Participant:*Registry trial.  

*John Øvretveit:*Yes.  That’s one of the conditions under which government funding is—the data is available to researchers.  As researchers at the Karolinska, we can go to any of the administrators of any of the registers and say, “We want to do—we want these data and to do research in this way.”  Now, as regards—and so, this is de-identified data.  We are able to work with them to use the data and run research on that.  A lot of the Swedish research that you may come across, clinical and other research, is research that uses registered data as whole or part of the research.  There are a number of randomized trials that do that.  

*Moderator:*Thank you.  We do have another question that came in.  Would you be able to discuss whether, and in which venues, any public discussion of ownership/privacy concerns of the patient data?  

*John Øvretveit:*Well, let me answer that in a fairly general sense, in a reflection.  No, actually, let me get some specifics of Sweden.  First of all—okay, well, I mean, put it this to me, as the patient.  When I get that piece of paper that says, “You’ve recently had a hip replacement.  What do you think?  Score it on this range here, naught to five, on these dimensions.”  What do I, as a patient, understand, in terms of who has access to that?  What control do I have over that?  

Well, I’m sorry.  I’ve been in Sweden 25 years, and I have, I don't know, just absorbed the culture.  If it comes from government, fine.  It’s secure and safe, and I’m not interested—I’m happy to give this feedback.  Do I need to have access to my data?  Do I need to check it?  I’m sorry; I’m trying to get to work.  I’d like to get this letter off, so I just score it and send it back.  Where does it go?  I think it goes to a third party that’s contracted by the government to collect all these and input it into the register.  

What I’m saying is I’m only just beginning to ask questions about this.  Some of the questions that I’m asking are raised by my looking at these issues, where patients have looked for access to their information and their devices, and also raised by—really, about the last two or three years—by NSA scares, as it were, NSA awareness, and also by Facebook changing its rules, by Google Health, suddenly getting an email from Google Health saying, “We’ve decided to stop Google Health.  This is just to let you know that all the data that you’ve been inputting to your Google Health thing, that’s going to be vaporized in a few months’ time.  Sorry about that.  Just didn’t work out, did it?”  

Now, I don't know if it’s slightly different with Microsoft Health.  In terms of HIPAA, there are a whole series of rules and regulations about anyone—when your data is digitalized, who can have access to that.  There I was, a week ago, getting my flu jab at CVS.  I think I’m one of the few people that read the fine print of the CVS agreement about where my data would go.  Essentially, it boiled down to two things.  As we’re governed by HIPAA, your data is carefully guarded, and so on and so forth.  Then, there was a later clause that said there are third party and other providers who “may have access to these data.”  We have no control, whatsoever, over what they do with the data.  By the end of reading that, I thought, “Fine.  What I’m about to write down here can go to anyone, anytime, anywhere, and it’s basically permanently in the cloud, for all time.”  That was my conclusion about there are ways around and aspects of that.

I think you really have to think of any body device that has streaming data, and anything that you input, that essentially, that is discoverable by anyone, anytime.  Now, I’m sure there are people who object and say, “Sorry.  If I’m using Kaiser or VA portal, that is very secure.”  I’m not sure about that.  I think we’re only at the beginnings of awareness and discussion and debate about this.  I think it’s going to go further, because HIPAA has to be updated and revised to enable research.

I think one of the issues is the balance between privacy and access and use for research.  There is some research that’s only doable or useful if you have patient identifiers.  I think one of the issues there is having encrypted ways to re-identify patients for research in different ways.  There’s a whole research program that really needs to be done here.  There’s a whole set of questions and issues about security, privacy, and access, so that the digitalization—so that you can get the precautions, but you can also get the benefits of research and practice from it.  I think the VA and the Kaiser are both fairly advanced in examining and thinking about that.  They’re much further ahead than the rest of America on this.   

*Moderator:*Thank you for that reply.  I just want to check in.  Do you have any audience questions in the conference room you’re in?  Not to put them on the spot.

*Participant:*This is David.  I’m happy to ask a question, if others are—if everyone else has asked.

*Moderator:*Yeah, go ahead.  

*Participant:*I think one of the issues that your talk raises, John, is the responsibility on the patient’s part.  Because it seems like none of this will go anywhere or be useful unless the engagement has a patient who’s really willing to take responsibility, both in entering his or her own data, or in taking the time to work with the physician.  Because it’s not just the physician who has to suddenly—or the other allied health professions that have to work with the patients.  The patient has to care enough to take the time.  It seems like there’s a whole agenda around health literacy and patient education that’s going to have to go with this digital movement.  

*John Øvretveit:*Well, in some ways, part of this is not being used.  It’s only after we’ve had the heart surgery that we actually begin to think about my diet and exercise.  There’s probably a day or two after heart surgery that is your window of opportunity, where you’ve got their attention *[laughter]*, basically.  God or the surgeon got their attention by what had to happen.  

Now, when it’s a chronic disease, it’s where there are troughs and relapses.  It's where someone’s going through a bad time that they get serious about doing certain things.  I think we need to be more aware of when are the windows of opportunity for patients, where they are more open to being engaged, and recognize that—unless they’re really hurting. 

Well, let me talk about myself.  Unless I’m really in pain, I just get on with my life and I don’t give a lot.  It’s when I have an Achilles heel, as I call it, that brings me down and stops me functioning and doing things, that I, then, start getting serious about prevention, and proper lifestyle, and getting enough sleep, and things like that.  Now, there is a bit of research on that, but not a lot of it.  It varies tremendously with different diseases and patients.  The issue would be the concept of a window of opportunity for engagement.  Then, also, the issue of, for patients who are less literate or low-income, trying to hold down more than one job to keep food on the table and the rent paid, what would engagement mean for those folks, and for people from minority groups?  Again, in LA and around here, we’re in a perfect laboratory to get into those issues, and in the VA, as well.  For example, for homeless and others.   

The last point I’d like to make is, and sometimes I find the word engagement very patronizing and around the wrong way.  Sorry.  Patients are engaged in living their lives and self-care 24/7.  There are certain moments when they invite physicians and the healthcare system to help them in their endeavor.  They engage the health system and physicians when they have no other alternatives.  It’s less painful and less hassle to make the appointments and go through the pains of having to engage with this system, because I’m in such a bad way that I have no alternative.  I think it’s for those kinds of perspectives that we need to say, “Oh, they’ve gone to this trouble and effort to engage us.  How can we use this opportunity best, in the short time we have?  What would be the follow-on from this, from their perspective, that would most help them?”  I think part of it is attitudes.  That the IT and the access and the data allows us to think about that in a different way, I think.  

*Moderator:*Thank you for that reply.  Well, we have reached the top of the hour, so if there are no other questions in the conference room, I think we’re ready to wrap up.  How are we doing in there?  I’m sorry?

*Participant:*We’re good on this end.  

*Moderator:*Excellent.  I want to thank you so much for presenting for us today.  I also want to thank our attendees for joining us.  It’s been a very informative presentation.  As Dr. Ovretveit mentioned, we do have supplemental—we do have supplemental materials that he has given us.  You’re going to receive a reply email in the next couple days, with a link to the recording.  Once you click on that page, there will be a spot up at the top where you can download today’s presentation, as well as those supplemental materials he provided for us.  As you can see up on your screen, there is a feedback survey.  Please just take a moment or two and provide us with some feedback, as your opinions are what helps guide what sessions we have presented.  Thank you very much, again, for joining us today.  

*[End of Audio]*

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