Fred Eberlein is co-founder and CEO of ReliefInSite. Fred’s career spans more than 25 years in the computer industry, working both in the US and Europe. His interest in pain management started in June 2000 during a meeting he had with Dr. Mark Perloe, in Atlanta. At that time Fred, an earlier investor in the medical technology start-up Ovusoft, was seeking Mark’s feedback on this unique fertility planning application. He had no idea the meeting would evolve into an ongoing and far-reaching interest in pain management that would eventually lead to the creation of ReliefInsite some years later.
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Dr. Mohammad Al-Ubaydli: Welcome to the Patients Know Best podcast. I have Fred with me on the line today. Fred, it’s great to have you with us.
Fred Eberlein: Pleasure to be here.
Al-Ubaydli: Fred, tell us a little bit about your background and how you got started in ReliefInsite.
Fred Eberlein: Well, my background is in Information Technology going back to the late 70s when they started off working for great company called Control Data Corporation, no longer around. They were a pioneer in scientific computing.
So I have been deeply involved in IT in various facets of it from hardware to software, from academic to business. Of course, you know, in my lifetime and all of ours I think one of the great cornerstones or movements in the IT has been the Internet, which has really taken computing to a whole another level.
Around 2000, I broke away from my traditional background and working for others and ventured out of my own and at that time I initially invested in a small company in Virginia doing work in fertility planning and it was shortly after that; that I came across an opportunity in pain management.
It so often has been the case in healthcare, the protocols, the tools, and what not are there, but the automation has been lacking. And what I identified was the tools that are currently in place have been for about 30 years in pain management for helping patients to record key aspects of their pain.
So I identified that as a working protocol, but I also learned, much to my surprise, and I guess therein might be opportunity that none of these had been automated.
So that’s what brought about my interest in ReliefInsite. It was initially just a concept back in June of 2000 and I began to researching and actually filed first. The idea was to file some patents in September 8, first patent, in September of 2000, and went forward from there.
Al-Ubaydli: So you have the website ReliefInsite that kind of allows the automation of collection of data about pain?
Fred Eberlein: Yeah that’s correct. What we are doing —
Al-Ubaydli: Go ahead. Sorry.
Fred Eberlein: No that’s okay, if you want to finish the question.
Al-Ubaydli: You know, I am just going to ask, so what does the company do on the site? What do people do using that tool?
Fred Eberlein: Well, first of all I should point out this is a secure HIPAA compliant website and it’s opened to patients. Our main website at ReliefInsite.com is free to patients and providers. Patients, once they’re registered and in course of the registration, they identify their primary pain. They can actually record and registration of the five pains altogether which is not uncommon for many of our users. I am sorry to say.
They also indicate diseases and other conditions they have, but essentially what they do with our services is to record the pain location on body maps that we have in Flash. For each location, they can indicate pain intensity. Then they record other key aspects of pain tracking such as characteristics of pain and symptoms, the impact that is having on lifestyle.
So we have this series of scales that patients use for recording impact on lifestyle and we also track medications and treatment.
So this is all recorded. We’ve worked hard to keep it quite simple so that patients can pick this up and use it and we work to make it intuitive. There is always room for improvement in that regard.
What really is important about this though is that we take all that information and we aggregate it in our reports module, it’s called Reports+ and that’s a key part of this survey.
So we aggregate this information to show longitudinally that is across time how the patient is doing and we compare pain levels with lifestyle and the impact the pain is having and symptoms and other.
All the variables that I mentioned are charted and graphed into standard or customize reports and the patients can see that information. It helps them to understand better their condition. They can save it in PDF format, print it, bring it with them to their doctors and they can also share the same reports online securely with their providers, family members, friends, and others. There is no limitation to the amount of sharing they could do.
So that’s kind of a quick overview of the service. On the provider side, providers as they say can also register through our site. It’s free to them and they can push invitations to patients. And when they do that, there is a link in the invitation or as if in an electronic invitation and when the patient who receives that invite comes to the website to register. They are asked if they want to share their reports with the provider that initiated that.
The provider name is shown, and they just need to click a box. And that then shows that patient’s name in the provider’s console. So when they log in, the provider, they can see all the patients that are using the service. All they have to do is click on the patient’s name to be taken into the reports.
This is a big value for providers not only because it helps them from a clinical standpoint to see longitudinally how the patient is doing, but it’s also a minimal amount of work for them, because this is a patient populated record. The information is populated, provided by the patient. It’s a data bank of information securely kept and backed up by ReliefInsite, that the provider can get to it anytime if they want to see that.
That can be very practical, very helpful for them to review that information. They may be providing consultation over the phone to patients. Or certainly to have that information available which they can print out before the patient comes in. Of course, they can incorporate these reports into their electronic medical records or to the patient’s chart and hard copy.
Al-Ubaydli: How does this improve existing process? Because the patient could already tell the doctor, I have pain in my hand and the doctor could always ask the patient, show me where you have pain. Now, why does looking at a website and all the data that the patient is entering, why that’s an improvement over the already existing workflow?
Fred Eberlein: That’s a good question. In the case of acute pain, in other words, I just happened to slam the gate on my middle finger, as I did a few years ago, what you just described is adequate. I go to the doctor, obviously the finger is swollen and very painful and of course they assess it and provide me pain medications and treat the finger accordingly. So, for an acute case like the one that I just outlined, that approach is fine.
For chronic pain, which is really what we are targeting here, so it’s good you raised this question that will draw the distinction. Our services principally for patients with chronic pain conditions. Of course, chronic is long term pain, and very often these are complex pain conditions, not even — I would say low back pain is not considered a complex condition, Fibromyalgia may be.
But any of these complex or I should say chronic conditions, it’s important to monitor them across time to really see first of all how the patient is getting on, how it’s impacting their lives and how are they responding to treatment, whether that’s biomedical treatment or complimentary alternative medicine, exercise, what have you. It’s important to be seeing how they are fairing. It’s important for the patient to see that.
So, we don’t recall so well how the med helped six months ago, nine months ago, or the exercise program. It’s hard for us cognitively to map that out our minds across time. So we are helping to document that and that documentation through ReliefInsite tells a story and that story is very important to the patient and the people treating the patients.
So again, big difference here between acute and chronic pain patients, and ReliefInsite is predominantly a tool for treating chronic patients or helping people with chronic pain to get better treatment.
Al-Ubaydli: Now, I am glad you brought up the sort of looking back another six months, because I was thinking only yesterday when I was with nurse, I have a genetic immune deficiency and I keep a symptoms diary for my nurse of when did I have coughs or cold and so on. Previously I would just go and say and she would ask how things been going and I’d say it’s been okay or I have had a couple of infections. But because I kept a diary of the last six months, yesterday was the first time that I could sit down her say, I had three colds. There was one that was bad, it required antibiotics and the other two were fine. So I am actually — I am okay.
This was the first time that I felt I should actually tell her accurately what happened. I suppose you are just following what happened every six months. Then I also — you once mentioned to me that even if you know clinicians don’t look at the data, just the act of documenting the patient history is a little bit therapeutic for the patient. Is that correct?
Fred Eberlein: That’s true and I must say that’s been one of the pleasant surprises that we’ve witnessed since releasing ReliefInsite which incidentally was commercially release in August, 2007.
We had a beta for about 50 months prior to that. But yes this is a very good point. I have been pleasantly surprised by the number of patients that have commented to us about their feeling of empowerment for lack of a better word. Obviously that’s a popular phrase, but they describe it other ways. Some indeed, for them it’s empowerment.
But irrespective in all cases, it’s been this self — this feeling of control and through control they have less pain. Now pain is in the head. It’s certainly a biological thing, there is no question about it, but how it’s interpreted is really at the essence of the patient experience.
So it’s very gratifying to know that control, documenting it, seeing it, understanding it helps. I think of about 10,000 patients, we had one and it’s true you should not preoccupy with your pain.
We had one who said stopped using it or using it less, because it made them fell more pain. So I just need to be objective about it and the majority of cases from what we have seen, and this is anecdotal, we have not conducted any studies on this in other words, but from the majority of feedback that we have gotten and I am going to say, it’s not overwhelming, but I would say we have had 30 or 40 or more users who have written to say things of these nature where documenting has made them feel better, made them feel more in control.
I have actually had some said they enjoy sitting down to do this, which is remarkable. We had one case of the user saying that they felt that it exacerbated the situation. We know that can be true and it’s something we caution users, do not preoccupy yourself with your pain.
Al-Ubaydli: Now the user interface is actually quite nice. It’s quite a nice experience to sit and click through things. But it’s based on standard tools for pain measurement. Is that correct?
Fred Eberlein: That’s right. Yeah, we didn’t want to — I am an entrepreneur IT person as I said at the outset, and being aware of the sensitivity within the medical community to everything that’s happening on the Internet and many approaches that are out there that are really not scientific, we did not want to go down the path of trying to better tools. What we wanted to do was automate known and existing standards and methodologies and protocols.
So that is exactly what we have done here. Everything that’s in our site is based on pain research and we update that as required, although there hasn’t really been a need for changing any of the logic in that context. Because, they said most of the logic protocols for pain management have been in place for about 30 years.
It still backs actually to a gentleman Ron Melzack from McGill who has a PhD, did a great deal of work in the 70s in this area. He is retired now, I think partially retired. But Dr. Melzack started the work in this area and others have built on it.
So we have researched this, we have worked with clinicians in understanding it and we have adapted it in ReliefInsite and of course for working on the Internet. The power of this is aggregating the data, as I was saying earlier in reports and having it timestamped. That’s been of the big, big drawbacks to the protocols being on paper. When patients have been asked to keep journals of their condition, they are very often questioned, not believed by the provider, and this is not mocking the provider, because they see everything written out in pencil and they speculate that.
Jane Doe just did it this morning in the parking lot. Sometimes it’s just that Jane Doe likes pencils. So, one of the problems when treating people with pain is that, you haven’t had time stamped records. We overcome that. Everything we have in our system is time stamped and whoever is looking at the records can see when the entries were made, they can see how many entries were made, how many were deleted, how many were changed. So, that’s one of the big benefits in doing this in an electronic form.
Additionally, of course, there is mapping out across time, because even the paper versions of the same don’t allow one to map this information across time longitudinally. You will have to take those forms individually and plot them out somehow and not only is that time consuming, it’s error prone and extremely impractical.
Al-Ubaydli: This routine testing, I mean, you have already began touching on the worrying to get patients that just to be careful, not to use your site to remind you of your pain rather than documenting your pain? In general what do you advise people as they begin using your product?
Fred Eberlein: I didn’t get the last part, what do we advise people what?
Al-Ubaydli: When they begin using ReliefInsite, what do you advise them?
Fred Eberlein: Well, I am sorry. What do we advise them? Well, we have —
Al-Ubaydli: Sorry [Voice Overlap].
Fred Eberlein: No, no, it’s thrown in my ears, I suffer from Tinnitus, so I have a slight hearing disability. But we advise our users and it’s written in our user guide also at the very beginning, not to preoccupy themselves with the pain, because that can exacerbate it and it is a very much the psychological state as it is a physical state from all my understanding of pain.
Now, what we do in the process of registration too is we have a reminder schedule. So the patient can create reminders. We don’t allow them to do more than one a day, although they can override that if they want. They could have up to three a day. It might be relevant to say, in the morning at 9 I want to remember to score my pain and at noon to record my meds and then in the evening to record my lifestyle.
But, basically within the app and the registration process, we are recommending one a day and not less than one a week. That recommendation is based on whether that patient is undergoing treatment at that time or not. If they are undergoing treatment the time we recommend one a week. So, that’s what we advise patients to do. We also advise them within the app to be realistic in their measurements.
There is a tendency for some people on the scale of zero, no pain to ten pain worst than you can imagine to exaggerate, and one can speculate as to why people exaggerate. Sometimes they have other motivations which I really won’t get into it this moment, but we do try to get them to be as realistic as possible and recording their pain and recording the impact of that pain to just keep it clean, solid record. They are going to get better treatment that way and so those — among the things that we advise the users to do.
Al-Ubaydli: Then from the clinician side as they begin working with patients like this, is there any advice that you give them?
Fred Eberlein: I am sorry.
Al-Ubaydli: With the doctors and nurses who begin using ReliefInsite with their patients. Do you have any advice for the providers?
Fred Eberlein: The advice for the providers is actually, I guess ties in with the last point for the patients too is, now that you have this record, share it, bring it with you to your appointment and share it with your doctor, because this is very, very much about improving communication between providers and patients, that’s the cornerstone of our mission.
In a like way, yes, to providers is encourage your patients to use these things. Look, go to this site, register. It’s as easy as — it’s two pages to fill up, all you have to do, the overhead is minimal, I say pages are shorts screens that ask for — address and create a password and then the second one for the provider is to give information about their practice. That by the way populates our find a provider list so that the patients existing or new patients can find healthcare providers and link up with them via ReliefInsite.
So, I encourage the providers to go and use it and to see how easy it is and just to make their patients aware of it, because unlike EMRs and so many other things out, there is the overhead involved in this is really minimal, it’s close to zero, beyond what I just said, the registration and making your patients aware.
Now, we have some providers in fact that will have their administrator, use our invitation module for firing off invitations to their patients, and that’s quite easy. They only have to put in the patients first, last name and email address and the email invitations are already prepared. The provider can edit that, if they want, but it’s quite simple and it just says, I recommend you use this service for tracking your pain, a few more words and then in that mail in embedded a link. I mentioned earlier the recipient of it, the patient clicks on that link and it takes them into registration and there it says, do you agree to share your reports with Dr. Jones?
So, we really have worked hard to keep this simple and particularly for providers to give him a lot of value with really about as little overhead as could be possible with keeping any kind of a patients record and it’s free. So, it’s hard to lose.
In our space, the pain management, the last point I would want to make here in support of providers, it’s very important to have documentation. There was the notion for some years within I think the provider community that if you didn’t have documentation, there was nothing to prove.
Well, in the court of law, it has turned out that; that thinking is bad and dangerous, because what happens when a medical doctor is put on the stand, one of the first questions are going to be asked is where are the records and if they don’t have records, then the question is going to be, well, then you must not have cared for the patient very well.
So, it’s very important for them to have records. It’s very important for them to track and in many jurisdictions it’s required for them to have records regarding prescription of opioids. Obviously, it’s a lot of ramifications with that, but we have not only state governments, but the US drug enforcement agency and others that are very keen on monitoring these things.
So, this is another value to any medical doctor who is prescribing opioid to their patients to have them use ReliefInsite for tracking that and I think the other final thought on this is that, if the patient is recommended to use the service and they are not using this service, again the medical provider has that arguments. But we have been trying to engage the patient, this is a tool we recommend they use, they didn’t use it. We made our best efforts.
So, one way or the other it’s I think for the medical doctor, in no little situation using our service and again if it’s free. So go for it.
Al-Ubaydli: I am going to just check back to, if the provider keeps the record because the patient uses the website with them, is there a danger that that provider would be locked out of assessing their record. So for example, the patient revokes access by the provider and how does the provider make sure they always have long time access or a copy of the data, so they can protect themselves medico-legally?
Fred Eberlein: Now, that’s a good question. A very good question. You are absolutely right. Certainly, in our web service that’s patients centric and that’s what we typically recommend. There is a lot of our business by the way is around and it’s revenue part of ReliefInsite is derived from customizing our service for our clients. An example of that is the recent site we developed for the pharmaceutical company UCD for helping patients with rheumatoid arthritis. That’s been a revenue model for ReliefInsite.
So back to your point, you are absolutely right, the patient at any time can within, what we call, our sharing partner module deletes anyone that has access to the reports.
So the way the provider gets away around that is to, as I mentioned earlier, you can save to your computer a PDF version of the report. So that would be the wise thing for any provider using our service that wants to have a lock on that record, at least historically. Like, you can’t obviously guarantee that going forward, because again the patient can delete it anytime, but at least that they go in and they see, there is an entry or maybe no entry for that patient in the scenario I described a moment ago, they can create a PDF report, save that to their computer, attach it to the EMR, if they have EMRs. That would be the way at least of maintaining some record which they have control of going forward.
Dr. Mohammad Al-Ubaydli: [Audio Disturbance – 00:26:05 – 00:26:25]
Fred Eberlein: You know, Mo, I am sorry, you are breaking up there. I didn’t hear what you are saying. Obviously, this is a Skype connection. So —
Dr. Mohammad Al-Ubaydli: [Audio Disturbance – 00:26:35 – 00:26:41]. Stay on the line, I will call back with a 00:26:46 in one second.
Fred Eberlein: Do you want to do that, you can just put it into the message box on Skype, the chat, I should say.
Dr. Mohammad Al-Ubaydli: Oh, yes. Okay. What did you learn from watching your customers?
Fred Eberlein: Okay, what did we learn from watching our customers? Well, we’ve learned that we can never make service too simple and that we could do more in that respect. We have also learned, and I don’t want to sound negative, because this is a generalization, but there is not a tendency for people to read. So again, that drives us more towards making the service that we offer as simple as possible.
We could do a better job, it’s not just the user’s fault. We could do a better job of making it easier. I think we have done a good job, but there is room for improvement and providing more animation or videos and things like this.
So those are a couple of, I guess, criticisms I would have of ourselves and what we need to do to better address the consumer. The upside is what we have observed is that consumer likes the service. They, as I was saying earlier, benefit from this and it is true as I was saying that there was a feel of control and empowerment, but most often, it’s going back to what our mission is, and that’s probably the best thing to hear is that this helps them to communicate with their doctor. It helps them to make much better use of the time they have and that the doctors like these reports. The doctors enjoy or appreciate getting this accuracy from their patients.
So that’s what we have learned from the patient that the model works, that there is a need for this and not just with themselves, but with the providers, and that it does foster better communication and better treatment. That’s what this is all about. So I think what we have learned in a nutshell is that it works, it has a need, and we just need to work on building that out and making it more relevant and easier to use.
Dr. Mohammad Al-Ubaydli: So what do people worry about when they begin that they should not worry about?
Fred Eberlein: Yeah, that’s a good question. I think, first of all, I can’t really speak with authority about what they worry about, but I do think from comments you get, and it’s very interesting if you look at age groups, but the older the user is, the tendency is the less they seem to understand the working of the Internet.
There is, and justifiably always, a concern about privacy of information. But sometimes it’s those same users that will write you an email and say, I forgot my password, but I think it was, and they write the password and the email. Of course, we encourage patients or users never to do that.
So I think some of the worries that the user have in this medium, and this is fortunately, as time goes by, a fewer number of users. Five years ago, amazing number of people, more on the clinical side than on the patient side saying, oh, you know, my patients don’t use the Internet. We rarely hear that anymore, though sometimes it still comes up.
We know this is not true. People have assumed that, oh, those lower income folks can’t afford computers. Well, maybe not, but they buy an iPhone that might be a refurbished iPhone at Wal-Mart. So fact is that as you will know the Internet is here to stay, people are using it increasingly for everything, and becoming comfortable with that.
So there’s not so many worries as before. Again, security is always a concern and people should be cautious, but they should also temper that cautiousness with some pragmatism. One of the points we say is, look, if you are concerned, don’t — just close too much information. We have comments areas, free text areas where patients can write in whatever they want and I think it is a note of caution for everybody to be careful what they write down and I think sometimes we are not cautious enough with that.
I am thinking more about information getting into the hand of an insurer, sadly enough who might deny certain coverage to a patient, because whatever; a family member was suicidal. We’ve heard incidents like this. I think they are prowling. They are immoral, but they happen.
So we have some contradictions here, but these types of worries I think people should have, they don’t show enough or perhaps respect enough and the other ones I say are more on the technology side, which are diminishing over time. So I think we need to refocus our worries in short, I think, more about what we are documenting and what we might saying that could work against us in the future and less so about somebody hacking into the account.
Dr. Mohammad Al-Ubaydli: That’s interesting note. I was speaking to a security expert from the University of Cambridge the other day and he was just pointing that actually, the most likely security risk isn’t the hacker a thousand miles away; it’s your relative who gets access to your password and they have far more interest in your records than a — it’s a very tiny number, but they have more interest in your records than the hacker. So it’s kind of setting up a system so you understand how to maintain your privacy, how to take control of your healthcare.
So this has been really interesting. Is there anything else I should have asked you?
Fred Eberlein: No, but just on this last point of security, because it is an intriguing one. I think it’s absolutely true what you heard and I just know from my experience in business, most of what is hacked or leaks out of an organization occurs internally, very often it’s passive. Something we know in the business world, a salesman who has just been let go, leaving the office with his laptop or her laptop with all their leads and prospects on that. There is a great bunch of information leaking out of the company.
So there is a lot of passive loss of information. We wouldn’t call it hacking, but even malicious things of this nature do happen internally. So I would entirely agree with this assessment, although I can’t say I have done any studies in that area, but it likely is someone close to that patient that can be getting to that information.
Now just on that note, by the way, one of the features that we have in our service is the default, the patients can override it, but it’s the automatic logging out. So if your session is inactive for 15 minutes, it will log them off and blank the screen. We imagine in this scenario where our user might be actually making entries from their office and get up to go to the bathroom and forget to log out. But it can also be an important in any setting to have that kind of a feature.
We have implemented some other security features as well within our service. Many websites today will have you register your username as your email address or you have a username you can’t change. In our case, the users can go in and when they do register, it is the email address, they can override that. They can create another username that’s not a working email address, but simply a syntax of an email address, as another level of security.
So I just wanted to add that in. Security is very important to us. We are HIPAA compliant. We are backing up our system daily. We are looking at traffic coming in and out of the servers using intrusion detection and other types of tools to ensure that only the folks that have accounts can get to them.
So far the records have been pretty good in that regard, but you have to stay and be guarded all times from those things. But aside from that, I don’t think there is anything we have missed here. And I thank you very much for your time, Mo.
Dr. Mohammad Al-Ubaydli: Thank you, Fred!
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