Jon Erickson is the co-founder of Parlerai, the world’s first augmentative collaboration service. He has a daughter with special needs and is a longtime Internet Technologist. His technical expertise, business experience and personal responsibility for his daughter led to the vision of Parlerai. Jon has a BS in Management Information Systems from Alderson-Broaddus College, in Philippi, WV.
Parlerai is the World’s First Social Collaboration Network for Children with Special Needs and Their Families, Friends and Caregivers. Parlerai creates a secure network of family, friends and caregivers surrounding a child with special needs and uses innovative and highly personalized tools to enhance collaboration and provide a highly secure method of communicating via the Internet. The company offers a wide range of products and services designed to harness the power of the Internet for children with special needs – at any time, at any place, on any device. There are tools for parents, tools for children and tools for caregivers.
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Al-Ubaydli: Welcome to the ‘Patients Know Best’ podcast. My name is Mohammad and I am here today with Jon Erickson from Parlerai. And Jon, I am sorry, I should have said Parlerai.
Jon, thank you very much for coming on the show.
Jon Erickson: Hello! How are you?
Al-Ubaydli: Jon, I was really interested to hear about your company, because both you and I are on the same panel, the State of the Cloud Conference in Boston, and then as I read more about your work, I was really keen that you do a podcast with us.
So Jon, tell me who you are and how you got started in doing Parlerai?
Jon Erickson: Sure. First of all, I have had a long career in technology with big enterprise. I worked at Fidelity Investments for quite a while, and in fact, I worked for Colt Telecom in London for a few years as well.
And while I was living in London with my wife, we had a daughter who was born with special needs, and going through the process of having a child with special needs and severe disabilities, my wife, Kristin, and I really saw an absence of tools for a parent to manage the people and information around the child, as well as a lacking of technology for children with special needs.
And part of this grew out of a frustration where I saw big enterprises, big corporations, had these wonderful tools and utilities, and we said, why can’t we make these available for families and parents and those with special needs?
And with the growth and prevalence of social networking and touch-screen technology and open source software, it’s becoming increasingly simple and easier and cheaper to build these services.
So two years ago, my wife, Kristin, and I decided to do something about this and we started Parlerai as what we call an Augmentative Collaboration service for families with special needs.
Al-Ubaydli: So what does a parent who uses your software, what do they do with it?
Jon Erickson: Well, what happens is a parent would subscribe to a service and they create a network on our website. I mean, we are a web service. So a parent creates this network around their child and then they invite people into their child’s network. These people could be parents or teachers, grandparents, friends, family, doctors, aids, you name it. But they are people that are involved with the care of the child.
And then the parent will put information, whether it’s IEP information, medical record information, whatever is important to that parent regarding that child, for sharing and collaboration.
We also provide tools so that a parent can track and trend data; data that’s important regarding their child, whether it’s the therapy they take, the types of medication they take, you name it. We are a very flexible system. So the parent goes through and creates this network, creates these utilities, and they use it to share and manage information.
Al-Ubaydli: So why — I guess you started this because your family itself found it so useful. So why do the different parents find it so useful and so necessary to use that website?
Jon Erickson: Because in reality, when you have a child with special needs, you don’t just go to one doctor, you don’t just go to one school, you actually will have multiple hospitals, multiple schools, multiple institutions, different aids, different therapists, different teachers. And the amount of information associated with this child is staggering.
We saw this while my daughter was born in London. She was born in the Portland Hospital for Women and then she transferred to Great Ormond Street Hospital, and then also being American, we came back to the East Coast, where she has been in the care at Tufts-New England Medical as well as Children’s Hospital Boston. These are all great hospitals, these are all great institutions, but how do we share that information across the different groups?
And then in the case of our daughter, we started exploring alternative methods in treatments and so forth. So there is no single tool or repository that any of these institutions can make available. So we thought we would do something for what we call the institution of parents. There needs to be a platform for them to manage their information.
Al-Ubaydli: Yeah, I agree. I am sort of thinking back to my parents, when I was first diagnosed with my genetic immune deficiency. I mean, I always say that the network has to be centered around the patient rather than the patient checking all these multiple sites for these multiple doctors and nurses, because at the end of the day, the only person who turns up to all the appointments is the patient, and so you want to make sure that they are the ones who have the data and then they share it with everyone and they coordinate all the care.
Jon Erickson: That’s correct, I completely agree with that.
Al-Ubaydli: So as sort of parents begin to sign up to use your software and begin using the website, what kind of advice do you have for them?
Jon Erickson: Well, what we do is — the advice we have is, first of all, invite the people into your child’s network that are important to them, and what you will find are those people will participate because the people that are in this, involved with the child with special needs, really do care and will do whatever it takes to improve the quality of life. That’s number one.
Number two, there are lots of capabilities that Parlerai has. In addition to the Collaboration utilities, we have tools for the child themselves, from an assistive communication perspective. We have several tools where the child could use this to communicate and also use the Internet. So to get that set up and applied for their child is also useful.
Al-Ubaydli: And in fact, the kind of people that should be invited, obviously the doctors and nurses, family, relatives, and are there other people, special workers, who else is useful?
Jon Erickson: Yeah, and actually to get back to your prior question, really the most popular utility that we have is what we call, What I Did Today. And it’s a data tracking and data trending utility. And what we suggest is to create that template of the things you want to track on a regular basis, whether it’s physical therapies or speech therapies or medications or what have you, and get that template set up.
So to answer your question, the people that are involved with your child on a day-to-day basis or weekly basis, they are the ones. And these people are typically the aids and therapists and teachers, because when you have a child with special needs, keeping them up-to-date and informed about the child’s mood, feelings, medications, whatever it may be, are important. It’s this day-to-day quality of life that affect a child and the families and those involved with the child.
So it can be anybody. I mean, in many cases, using this, family members that live in other parts of the country or the world can stay up-to-date, because as we track this information, we provide updates via text and email messages, so that my daughter’s grandmother, as an example, can stay up-to-date on my daughter, even though she lives a 1,000 miles away.
Al-Ubaydli: I can see the family members wanting to be kept very frequently up-to-date. How do you find the professionals, so the doctors, the teachers, do they want to be kept, sort of a daily email, or do they find it useful to log in on occasion to see the sort of two-week history, and it’s the look back that they find useful rather than the update they find useful?
Jon Erickson: Well, obviously certain doctors and people don’t want to receive these frequent updates on a daily basis. Our system has the complete flexibility where the parent controls what information is being sent to whom and when.
So for people like that, we don’t give them those daily updates, but when you go in for your annual meeting with a geneticist or what have you, you can query a report, you can pull up statistics and make them available as needed. So we have that flexibility in there to account for these differences. It comes down to the parent, knowing who needs to receive what information and when.
Al-Ubaydli: So what have you learned from watching these parents using the software?
Jon Erickson: Well, one of the biggest things we have learned are, those parents that are actively engaged and involved with managing their child, love us. They love the concept and they jump right on it.
I mean, there’s always going to be those folks that, they are just so overwhelmed that it can be a bit of a challenge. But for the parents that are actively engaged in managing things, they jump right on.
There is also those people that still are hesitant to use things on the Internet, and that’s going to come with time. We don’t solve all problems for all families and the fact is we are just trying to make things as easy as possible.
Al-Ubaydli: Have you watched them develop particular habits that you haven’t even thought of accounting for when — I guess you would have designed this for what’s useful from what you know as parents. Have you seen them do things that you weren’t expecting?
Jon Erickson: Yes, and we get a lot of our best suggestions from these parents. And one of the things that’s great is this is a company that my wife and I own outright and when we get suggestions from parents about adding a feature, a capability, we can quickly respond and do it. It’s not as if we are a very large corporation that may take a year or two. Kristin and I are trying to do the things that have the most valuable for parents.
Certain examples are the use of certain symbols in our library, or just simply instructional videos of certain nature to really help things. Things that we thought were intuitive might not be intuitive to someone else. So we are always adding features and capabilities in this regard.
Al-Ubaydli: Jon, just go into a little bit more detail about the symbolic tools you were describing, because they were really interesting when you were describing them to me early on.
Jon Erickson: Yeah. Well, Parlerai has the concept of a library where we can share information in media. What we have done through a couple of partnerships is make available the use of PEC symbols, from Pyramid Educational Consultants.
So every user of Parlerai that needs access to some uniform PEC symbols have access to this in our library and they can use that with our ChoiceMaker tools, what I did — not what I did, but the Messenger tool.
And then we just arranged a second agreement with another company called SymbolStix just last week, and I think on April 10 is when those features will be available, and those include another 12,000 symbols.
So in total, we will have almost 15,000 symbols as part of the Parlerai library for all our users. So for those really requiring the assistive communication features that we offer, that’s a big benefit.
Al-Ubaydli: Okay. I mean, that was a really interesting special needs application that I was sort of intrigued by when you were describing it. When people start using this service, and this is both as a parent as well as the professional, what do they worry about that they shouldn’t, because they are kind of new to this area?
Jon Erickson: Obviously the biggest concern we get are, getting their teacher to use it, the teachers of the children. They typically will say, well, I am not sure my teachers and aides will use this. Those are fair comments. But the way we have structured our arrangement is, a parent pays for the service and then they can have users participate in the service as part of their child’s network. Those people are free, and because it’s free, because it’s easy to use, and it actually saves those people time. Once they understand that, those objections typically go way.
We have had great success with several schools in the area, where we simply need to explain what is Parlerai. I mean, we are a new service so they want to understand it. But once they see that, it’s been completely embraced. So there are objections, but they are, generally speaking, easily handled.
Al-Ubaydli: And then conversely, what do you think people should worry about when they begin, that they are not usually aware of until later on?
Jon Erickson: That’s a good question. The biggest thing is simply collecting all of their information in one place. Many people have that in hard copy format or many people assume that a single institution, such as a hospital or a school, is going to solve this problem for them. But that’s not the case. They are not going to be able to do this for all of their information. So having a single source of data, a repository that spans these different institutions is what’s important.
Al-Ubaydli: That’s interesting. I mean, in the UK, for example, there are attempts to centralize daycare for patients and there are some serious privacy implications to that. But the thing I find most interesting when I am talking to patients about it, they are often surprised to find out that their doctors don’t actually talk to each other, that they haven’t done the data sharing that’s important for the patient. So it falls upon the patient or the parent of the child to do that, and no one else will be able to care as much about it as you do.
Jon Erickson: I completely agree with that. When you consider, a patient or a child may go to different doctors, alternative care or alternative treatment. I mean, my daughter, for example, goes to a chiropractor. She goes to — she does hippotherapy at a stable close by. She does all of these different things that may not have anything to do with whatever medical treatment she is receiving, but they are pertinent to her care and well-being and it does need to be tracked. So no matter what, a single institution is not motivated, nor does it have the wherewithal to solve this problem.
Al-Ubaydli: I am just coming back to one of the things you mentioned about inviting the professionals to look at this data. So when a parent invites the teacher, is there a particular sort of advice you give them in sort of how to phrase it for the teacher, or is it literally, all the professionals — all the teachers care about the child and they would just — as soon as they have the free part explained to them, then they are more than willing to register and sign up?
Right now we are very motivated for the success of this and we will take the time to communicate directly with that school.
If it’s a teacher, typically what happens is, the teachers get so excited, they want to tell other people about it and then they want us, from a Parlerai perspective, to do a webinar or a presentation or what have you. So it’s all very positive. It takes time. We are a new thing, so there are times where we have to say, why would a school want to do it?
Then of course they have their own concerns about whether it’s security or electronic records, we have to describe how we manage that information. But at the end of the day, it’s a service paid for by the parent who is responsible for the care of the child.
Al-Ubaydli: That’s what it comes down to in the end is, what kind of privacy issues of data sharing is. If it’s the parent, on behalf of the child, making the decision, then they have already decided this is the best thing for them and everyone can just join in, because that’s what the parent wanted for the care of that child.
Jon Erickson: That is correct. When people realize that, it makes them feel empowered.
Al-Ubaydli: Yeah. Just before I move on Jon, remind me what Parlerai means? What does that word mean?
Jon Erickson: Parlerai means shall speak in French. The reason we came up with this is twofold. We wanted something that reflected our desire to help children communicate, so the concept of speak.
Then the second one is more personal to my wife and me. When our daughter was very, very young, she would only smile and react when we spoke French to her. She reacted very positively, nuances. So it just kind of happened that way, and it’s just more of a personal thing, and it just stuck.
Al-Ubaydli: Do you have any users in France, by the way?
Jon Erickson: We have — no, not yet, although we did speak with someone recently. We do have users in Sweden and England and a few other places. We are slowly growing. I haven’t checked lately, specifically in France, but I do know we have had some folks from France download our iTunes app recently. That’s a fact.
Al-Ubaydli: I am glad you brought that up. So you are bringing out an iPhone app?
Jon Erickson: Yes, we actually have our first version of an iPhone app available now. It’s a free download, but you have to be a user of Parlerai to take advantage of it. What this particular version does is it’s our What I Did Today tool. So it’s the data tracking components.
That being said, our second release of this iPhone app will be available in the month of April, which will have our ChoiceMaker capability, which is our Augmentative Communication function. So with that you will be able to use all of our PEC symbols and SymbolStix symbols and anything else on our library for assistive communication. We expect to have that available in the month of April. That also is a free download.
Actually, we are very excited about that, because it will be roughly the same time frame as the new iPad app.
Al-Ubaydli: I was going to say, this is great for April 3.
Jon Erickson: Yup. So we are very enthusiastic about Apple’s iPad and we think the Parlerai application will be a very fantastic asset from an assistive communication perspective.
Al-Ubaydli: That’s really interesting. I guess when I see you in April; I guess you will have the iPad by then.
Jon Erickson: I just received notice that mine is being shipped today.
Al-Ubaydli: Congratulations! Jon, is there anything you wished I had also asked you about that I shouldn’t forget to discuss today?
Jon Erickson: Actually, just one point to make. Even though we are a service that we have targeted for children with special needs, anyone requiring a little managed care can benefit from it.
For example, we know elderly folks that are in assisted living or even at home and they have people that come in and look after them, those families use Parlerai to stay up-to-date on what’s going on with elderly people within the family. That person themselves may not use Parlerai but everyone else does. So as I said, even though it’s targeted for children, anyone can benefit from us.
Al-Ubaydli: That’s interesting. The problem is the same across these groups, which is, you have a patient who has, lots of people from lots of different environments and social contacts to care about them and who need to coordinate their care. So what’s interesting to me is, I guess, as you begin reaching the much wider population of people that benefit from the 26:21 of these groups. I don’t know what point you begin considering changing the marketing on your main website, or whether it’s a different brand, but some kind of explanation that this is a generic solution that applies to any disease rather than just the initial disease group that you began for your own personal — for your own family.
Jon Erickson: That’s correct. I mean, we thought about doing this on a diagnosis basis. For example, cerebral palsy or autism or what have you. But what we did is, we built in enough flexibility within the tool to customize it for however you need, and we would probably continue to add features based on that.
That being said, we have considered branding this differently for different market segments, such as the U.S. military or like another large organization that supports a particular diagnosis. But we are a startup and we can only do so much so fast, but we would certainly — we have these thoughts, we were able to do that when the time is right and we will see how it grows.
Al-Ubaydli: Jon, I am really looking forward to seeing the growth. I am very pleased about the work you are doing. I know my parents would have loved to have a tool like that 20 years ago. So keep up the good work and thank you very much for joining us today.
Jon Erickson: Thank you very much, I appreciate talking, and I look forward to seeing you in a few weeks.