Discovering the Active Patient with Dr. Danny Sands
The 2021 update of the Press-Ganey Consumer Experience Trends in Healthcare report makes it clear how badly patient relationship IT is missing the bus. Some of the findings weren’t exactly newsworthy. The digital consumer experience becoming a make-or-break element of patient preference in healthcare shouldn’t come as a shock. Findings like “63.1% of patients prefer scheduling online vs over the phone” won’t be a surprise to anyone who has been paying attention to healthcare for the past decade. Neither should the fact that patients consider the ratings and reviews of a doctor to be more important than referrals from their current provider.
But the biggest takeaway from their survey shows how badly healthcare is missing what patients actually want. I spoke to Dr. Danny Sands, from the Society for Participatory Medicine, to get an idea of how providers can leverage technology to help get patients more involved in their healthcare experience.
- Supplying an easy, intuitive online experience is key to both recruiting and retaining patients. For healthcare organizations of all sizes and specialties, the electronic patient experience is no longer optional.
- Too many solutions and platforms focus on the nice-to-haves of patient experience, not the things patients really value. Easy widgets that automate SMS appointment reminders or offer one-touch payments aren’t the core of what patients want.
- Healthcare needs to start including the patient as an active participant in their health. This isn’t just an IT issue, but IT plays an important role by providing the tools to enable it.
What was surprising?
What drives patients not to just see a provider, but recommend them? What ranked higher than cost, positive reviews, or any of the bells and whistles of patient portals and outreach platforms? It was Quality of Communication: providers and staff that are attentive and helpful, pre- and post-appointment communication that provide actual content, meaning, and value to the patient, not just automated text reminders and bulk email blasts. Companies like Innovaccer have started to produce more interactive patient outreach tools focused on understanding the full breadth of individual patient context. Unfortunately, most products are still targeting patients as passive consumers of healthcare, rather than active participants.
More than ever, patients want to be involved
As the research for our Consumer Experience in Healthcare report has continued, it’s become clear that the tools to support the actively involved patient are still very immature. Most organizations are still struggling with offering passive access to information. Open Notes access to some clinical notes is mandatory but still controversial, and making lab or test results available in clear, meaningful ways is almost cutting edge. Offering patients the chance to respond to notes, to correct errors, or to offer additional evidence or data on their health and wellbeing seems like science-fiction, despite growing evidence of clinical value. As we move towards a virtual care future, actively involving patients and paying attention to their reactions, goals, and voices is going to be more important than ever. We need remote monitoring that leverages patient reported outcomes and patient feedback alongside device data, relationship management platforms which look at patient contexts and needs and not just clinical data, and home health tools that include patients in the decision-making process, respond to their preferences, and adapt to their circumstances.
After my last conversation with Rose Solomon from Boston Medical Center, our video series focusing on the needs and opinions of healthcare providers continues, with Dr. Danny Sands from the Society for Participatory Medicine. We talked about what participatory care really means, what technology and IT can do for patients, and what primary care providers need from vendors and developers trying to make the next generation of healthcare tools. You can find the conversation here, or on our Youtube channel. If you know someone who we should talk to, let us know! Help us make sure everyone is represented in the healthcare IT conversation!
Read transcript below:
Alex Lennox-Miller: [00:00:06] Welcome back to the Chilmark Research Channel. I’m Alex Lennox-Miller, a senior analyst here at Chilmark Research. Joining me today is a very special guest. Dr. Danny Sands is a practicing primary care provider, an associate editor of the American Journal of Medicine Open, coauthor of Let Patients Help, and a co-founder for the Society for Participatory Medicine. Dr. Sands, thank you so much for joining me today.
Dr. Danny Sands: [00:00:33] Good to be here, Alex.
Alex Lennox-Miller: [00:00:35] I think a lot of people are so used to the idea of medicine being something that they don’t really participate in. Can you give us a just general sense–what does participatory medicine really look like?
Dr. Danny Sands: [00:00:49] Well, the way I like to describe it, Alex, is that in general, we– and when I say we, not just doctors and health care professionals, but also patients–we sort of imagine that health care is somehow this car wash and it’s a car wash in which the patients are the car. Health care systems, the car wash and the patients are unhealthy or dirty, and they can enter that car wash health care system, cruise through it, passively, get health sprinkled on them and somehow emerge at the other end. And they’re healthy! Lo and behold.
Dr. Danny Sands: [00:01:23] So that’s a health care system in which, you know, people really aren’t engaged in it and we don’t get personalized outcomes. We don’t necessarily get good outcomes. It’s very expensive, and that’s not really what we should be doing in health care. Health care works much better when it is not a spectator sport, but a participatory sport. So I like to think about health care as if it were a collaboration, a collaboration between the patient and the health care professional, where the topic of that collaboration is the patient’s health. And so if we think about that, well what do we want to do? We want a successful collaboration. So successful collaborations involve a number of different things, right? We need to have open communications. We need to share information with each other. We need to share in our decision-making. We need to have mutual respect and trust, and we need to both be engaged.
Alex Lennox-Miller: [00:02:20] This is a fascinating level of conversation because we’re now at a moment where I think people are starting to feel like they can have more input, they can have more involvement in their care. But it’s something that is now mediated significantly through technology. We’ve seen telehealth explode and contract a bit since 2020. What are some of the types of technology or the types of tools that you’re seeing emerge now that can best enable that kind of collaborative relationship?
Dr. Danny Sands: [00:02:55] Sure. And let me just push back a little bit. Sure. I think that the technology is a tremendous enabler of this, but it is not actually necessary, nor it is. Nor is it sufficient. So, so in other words, a participatory health care relationship really comes from a change of culture and attitude. It’s the way we think about this, the way we enter into this way, a patient comes into the room and and what their expectations are and so on. So the technology enables that it can make it easier to do that.
Dr. Danny Sands: [00:03:28] Interestingly, Tom Ferguson, the late Tom Ferguson, was the person who created the term e-patient, and he was a big believer in this concept that we later call–people who were involved with him that he brought together later created this society for Participatory Medicine, we created that term–but Tom created this term e-patient. And and when he did so, it was at the time we were talking about all these health care concepts and technology as e-health. Yeah, and so everybody assumed, “Oh, it’s the electronic patient, that’s what it is.” But actually, it’s not. The e-patient is engaged, educated, enlightened and empowered, and the technology there is really not part of that–technology is just an enabler. It makes it easier because, you know, to answer your question now: if you have the right mindset, if you’re willing to be engaged, we can lower the barriers to engagement by leveraging technology.
Dr. Danny Sands: [00:04:27] And so, so let’s think about how that works, and I think it’s it’s very interesting. So as you know and you said, I do practice medicine and I’ve also worked, you know, I’ve worked in the industry for so long with many different companies who are doing really cool things. But I think we have to be very realistic about how much introducing technology by itself makes that difference. Yeah. So when I when I started, when I was doing my my informatics training at Beth Israel and here in Boston and Harvard Medical School, I was I went into informatics because I was trying to empower clinicians with technology tools so they can take better care of patients. But what I found in my own practice was these technology tools are equally empowering and even more so for patients and caregivers. Yeah. Now this is a long time ago when I did this, this was in the early nineties when I started doing ridiculous, crazy things like exchanging email with patients. Right? And and that was, you know, everyone thought I was nuts, but my patients loved it, and I realized that it doesn’t necessarily need to be extremely high tech to make a difference. So if we look at patient provider electronic communications, which then was just email but now is typically through portals, that alone is tremendous and empowering for for patients.
Dr. Danny Sands: [00:05:55] That’s important because it allows them to ask questions, for example, decide when they need to go in to see their doctor, right, all these kind of things. But the other thing that was an early technology that I introduced or I made people aware of in the at Beth Israel was all of the information that’s out there. So when I think about the the core things that help patients get more engaged in their health, I kind of think about communication as one of them. And electronic communication would be an example of that, but that also carries over into other forms of communication as well. That may be electronic. And then the second area I talk about is information. And so on the information front, and I know I say, Well, you know, it’s just information, you know, knowledge is power, right? That’s that’s what it’s all about. That’s what Francis Bacon said. And so having information available is so important. We used to think about medical information as totally the purview of physicians, right? And that that leads to a model of health care, which many physicians are comfortable with, which is information asymmetry–where the physicians know everything and the patients know nothing.
Dr. Danny Sands: [00:07:15] And by the way, that’s a term derived from warfare and from economics, and it’s not good. Yeah, we need to have information symmetry and all of the health websites that are out there are fantastic. And now, of course, there’s even more types of information because not just static information. For example, there are websites that are going to help you make decisions. They’re going to give you feedback. And I think that that’s only the beginning, because I think there’s more to come there as we personalize outreach to patients and give them information that can help them change their lives. That becomes really more, more interesting and powerful.
Dr. Danny Sands: [00:07:54] I spent many years developing a clinical decision support to have tools that incorporate all the patient’s information and then reach out to the physician or other health care professional to tell them what needs to be done for the patient. But those that kind of information should be fed back to the patients as well, right, because they have the most at stake. And in fact, patients just aren’t in the office all the time, right? And so we need to to take advantage of that. So I think that’s an important thing. And then the third bucket and then I’ll let you go on.
Dr. Danny Sands: [00:08:27] The third bucket is about convenience, and what are we doing to improve convenience for patients and tools to allow them to get their prescriptions more efficiently, tools that help them schedule an appointment more easily. Tools that help them get care. So you referred to a little while ago to telemedicine, right? The COVID pandemic has brought us to this point where all of a sudden we were forced to innovate. Now, many of us have been waving the banner of telemedicine for a long time. That’s an element of convenience, and we were pushed to do that innovation because of COVID. But it made people realize, Hey, there’s a heck of a lot I can do using those technologies. Patients don’t always need to be in the office, and I would argue from a patient perspective, why should they spend half a day of their lives stopping what they’re doing at work and then driving across town, finding parking and waiting for their doctor and blah blah blah? Why? Because many times we can do this, whether it’s through email, which is asynchronous or whether it’s through some sort of a chat or whether it’s through telemedicine. And you know, a lot of our adoption of these things has been, as you and I have discussed in the past, driven by reimbursement.
Alex Lennox-Miller: [00:09:39] I think you made a really good point, which is that technology here is not a cure all. You don’t just throw technology at the problem and watch it get solved. And one of the things that we’ve seen over the last 20 years or so has been some of the unintended consequences of technology when we talk about provider burnout. For example, we see issues of too many messages, too much feedback, too much work being shifted onto the provider so they can’t focus on clinical care. As we start to see more of these tools, and as we start to potentially allow patients more of an active role in providing feedback, providing information, actively requesting care, actively communicating about side effects or how they’re feeling, how do we best support providers like you to prevent this from all just falling back on them? What are some of the most important parts of this technology that need to be used to prevent more provider burnout?
Dr. Danny Sands: [00:10:48] Yeah, this is a really, really critical thing. These unintended consequences, and I sometimes feel bad because I was an early proponent of electronic health records and now my dream’s come true. Everyone uses an electronic health record. And what’s happening to us, right? We have terrible user experience on the doctor side. It’s contributing to burnout attributed to people dropping out of health care and we have all this information, and when we can make health information exchange work, then what’s happening is this information is coming all in, but it’s not coming in a way that we can use it.
Dr. Danny Sands: [00:11:24] As we bring patient generated health information to this. Then it becomes another layer of problems, right? Because then we have all this other information and this is information from the patient, not from a, you know, a legitimate or a standard medical source, right? So, so clearly, we need to do several different things. So one is that we need–anybody, anybody who is creating a digital health tool of any kind–needs to understand the users very well and needs to really create tools that understand their workflow and what their experience is. It’s so important whether it’s the doctor side or the patient side. It’s just so important. And the problem with electronic health records is so many of them are really there to maximize billable hours in a fee-for-service world rather than help the physician get through their day. So that’s one.
Dr. Danny Sands: [00:12:16] Number two: where as we get to patient data, patient generated data, we need systems that pre-digest that information. So, you know, I don’t want a full stream of how many steps you took every single day and what every single blood pressure measurement is. I need systems that will understand that information, interpret that information, identify trends. Let me know when something is significant. One of the companies that that that I’ve worked for is, you know, is Conversa Health. It was recently acquired by AmericanWell. And and what we did is we rather than letting patients just submit whatever they want whenever they want. This understood the patient. Conversa Health understands where the patient’s needs are, what conditions they have, and it reaches out to them in a very easy way so that they can provide that data back. And then it sort of pre-digests that and identifies the trends, which I think is really important in the area of integrating different all these different data streams. We need other tools for that. So a company that I’m the chief medical officer of now is Diameter Health and Diameter Health has amazing technology that brings all these disparate data streams together, and it normalizes, enriches, reorganizes, duplicates and summarizes that information so you can have overall view of what’s going on with the patient, no matter how different are different sites they get.
Alex Lennox-Miller: [00:13:41] And that’s becoming even more important now as patients are getting access to care from all over the place.
Dr. Danny Sands: [00:13:48] That’s right. And so, yeah, and so we have this problem as physicians. And by the way, it’s a problem for patients, too, because if you’re a patient and you get all your care through me and the practices that are associated with Beth Israel, yeah, you can log into one portal and get all that information. That’s fine. But many people aren’t, as you’re pointing out. And so that interoperability problem affects you as a patient because you don’t have a unified view of your own health data. And so, so when you talk about things that are empowering to patients, they’re helping patients. That’s a piece that they need if they need to be able to see their health information. I talked about general health information earlier with websites and decision support and so on. But when I talk about information that patients really need, that’s type one information.
Dr. Danny Sands: [00:14:34] Type two information is information that’s specific to you. So it’s your record, it’s your health information and so on. And that’s critically important. I helped develop one of the nation’s first patient portals, and one of the things we really believed in is: let patients see their records. And it’s huge. It’s hugely powerful and very, very important. Type three information, by the way, also important, which is information from others like you. So that’s like a core or smart patients or patients like me. That’s valuable, too, and it’s very different from those other sources. Sure. So those are things that are important as well.
Alex Lennox-Miller: [00:15:10] In your practice–and going back because as you said, you’ve got a large history here trying to push forward and move this industry in a much more active direction. We’re starting to see results now about how often patients actually use these tools when they have access to them–how do you best engage with the patient? How do you make sure that they aren’t just downloading it, logging into it once and then forgetting about it? What are some of the biggest obstacles that you’ve seen in terms of being able to not just get patients onto a tool, but using it consistently and reliably?
Dr. Danny Sands: [00:15:53] You know, ultimately, whether it’s on the physician side or the patient side, people are going to use what brings them value. So one of my mentors who’s unfortunately deceased, Warner Slack, professor at Harvard Medical School, said This is this is about every user is a lab animal, basically, and they are they are triggered by positive response to things that they do. So if they get some benefit from interacting with that system, they’re going to do it again. But I think too often we in the digital health industry sort of live in this fantasy world and it’s like, if you build it, they will come. Everybody’s going to want to clamor to this tool. You just put it in front of them, and they’re just going to go wild. Or it’s not recognizing that, oh, well, physicians, maybe they get some value from it, but they have to literally spend every minute of their day in the electronic health record. And if you’re going to have them log into another system, it’s just not going to work.
Dr. Danny Sands: [00:16:48] So I think the biggest problem we have is that we’re not delivering value back to the people who use it right? And, you know, even when you look at portals, I’m a huge believer in patient portals. But even then, not every patient looks at their records. I would love my patients to always look at their records and their notes, especially before they come in for their next visit. But they don’t all do that right. And some of them get value from it. Some of them don’t.
Dr. Danny Sands: [00:17:16] On the other hand, some patients find it hugely valuable to be able to get a prescription renewal online or things like that, so they may interact with those elements. A great example also is on the communication side. So if you’re my patient and you send me a message on patientsite and I don’t respond, yeah, then that’s going to extinguish that behavior, you’re not going to want to do it anymore. But on the other hand, if I respond and give you useful information, then you’re going to say, Oh, this is useful, I’m going to keep using this. \
Dr. Danny Sands: [00:17:50] Another example, another company I work with is a company called MediSafe, MediSafe provides a free app for patients, and it allows them to store information about their medications, learn their medications, but also help them to take their medications. And many patients say, you know, Dr. Sands has prescribed all these medications for me and my cardiologist, I’m on 15 medications, right? How am I going to remember to take these things? And then along comes MediSafe. I say, Oh, we can do this for free and patients love it, and patients go back and use that. So we need to be very simple and think about what are the patients going to do? Just because there’s a FHIR interface on the EHR, which we will have hopefully soon, doesn’t mean that all patients are going to download the information or even use their information. So I think that that’s those are the things we need to be thinking about.
Alex Lennox-Miller: [00:18:41] Yeah, that question of feedback and and making sure that first of all, patients are–anybody is–getting it, that they’re just seeing that somebody looked at something and saw it and will get back to them, can make such a huge difference. One of the things that we’re starting to see now as natural language processing and conversational AI become more sophisticated is the ability for that technology to play that intermediary role and to have chat bots or AI driven engines communicating with the patient, either on their own or with a provider tied into the loop at some point in the workflow. What do you see as the future of that? Is that something that you see you’ve seen patients get value from? Is that something that as a provider yourself, you’re concerned about your patients having access to that? Or do you see it as potentially because it’s giving them that feedback, allowing them more participation, more information that it’s valuable on its own?
Dr. Danny Sands: [00:19:46] I think that we have to recognize that patients are usually trying not to think about their health all the time. Yeah, most patients don’t want to think about themselves as unhealthy. They don’t want to. They don’t want to consciously do that. So we have magical thinking if we think that they’re always going to reach for a technology that’s not reaching out to them. And so so yes, when they have a need, they send a message. They do whatever it is. Yeah, that they’re going to do that. But when they don’t, they should be focused on their health. They’re not always so we need to reach out to them. And that can be a chatbot, which is similar to what Conversa Health does. It can be a reminder to take a medication which is what MediSafe does, and I think that’s where good things can happen. And I think that as we get more sophisticated with the tools, well, let’s imagine a future state in which it’s not just my EHR, but it’s all the EHRs and the places that I get my care. All that information is constantly being looked at, and there’s an AI engine with machine learning behind it. And the AI engine is looking at this and trying to figure out what health recommendations it might have, and it’s sending that information to both the patient and their health care professional. That would be really cool.
Alex Lennox-Miller: [00:21:08] That’s a really excellent point because certainly, you know, one of the biggest issues we’ve seen in preventative health is the ability to address patient health needs before they become acute. How do you, you know, if the only time you see patients is when they have an appointment or when they feel sick, then you’re not able to stop them from feeling that way. When you have tools that patients have to reach out to engage with, you kind of have the same problem. You may be getting them a little bit earlier in the process because it’s more convenient, but you’re still only addressing them when they don’t feel well, as opposed to doing the things that are needed to keep them from feeling sick in the first place.
Alex Lennox-Miller: [00:21:49] Thank you so much. This has been a really fascinating discussion. I just have one more question for you. As you said, this is an area you’ve been active in for a very long time. What drives your passion for this topic and what sustains it?
Dr. Danny Sands: [00:22:05] A really good question, Alex. Well, first of all, I’m an optimist, so that’s part of it, but I think part of it is that early experience I had in my office at Beth Israel, taking care of patients and having this aha moment where I said, Wow, these technologies can be so empowering to patients. And when I got to see what happened, when patients had access to information and how some patients, not all patients, some patients really got motivated by being able to send an email or see information about their condition online, see their record online. All this stuff really changed my thinking about all this. And then I became part of a community of like minded people, such as the people at the Society for Participatory Medicine. And I’ve seen how in my own patients and in this community that thinking differently about health care and leveraging technologies can really change people’s lives. And so that’s really what motivates me, and that’s why I’m so passionate about this and I love innovation when it makes a difference. I don’t like just doing innovation for innovation sake, but if we can really understand the users of these technologies, we can introduce technologies that makes a difference. That gets me really excited and that feeds my passion.
Alex Lennox-Miller: [00:23:24] That’s great. Well, thank you for joining me today.
Dr. Danny Sands: [00:23:26] Thank you, Alex. It was fun.
Alex Lennox-Miller: [00:23:28] Thank you for watching the Chilmark Research channel. If you enjoyed the video, please like and subscribe to the channel if you want more content. And always, please leave a message. We love hearing from you. If you want to get in touch, feel free to reach out. Thanks very much. Have a great day.