Deal Flow

Speak Your Mind ponders its next move

Disruptive, patient-directed initiative that uses off-the-shelf technology to help the disabled to communicate struggles with best way to create a sustainable business model

YouTube video from Speak Your Mind Foundation

Steve, an ALS patient, prepares to use a communications device built by Speak Your Mind, to remotely pour a bucket of ice water over Speak Your Mind founder Dan Bacher, with Steve using his eyes to control the action.

By Richard Asinof
Posted 11/24/11
Dan Bacher, the founder of Speak Your Mind, a disruptive startup in the assisted technology sector, talks about the problems of designing a sustainable business model, sharing the barriers the nonprofit faces in choosing how to scale up in the market.
For all the money raised by the ALS Foundation as part of its Ice Bucket Challenge for research, what kind of financial support could be shared to support the development of devices that help patients suffering from the debilitating symptoms of the neurological disease maintain their ability to interact with their family and friends? Is there a network of nursing homes in Rhode Island, as part of the culture change initiative, that could invest in the technology platform being developed by Speak Your Mind, as a broad initiative to improve the quality of life of residents? Can Healthcentric Advisors, as part of its quality improvement efforts for Medicare in the region, partner with Speak Your Mind as an example of patient-directed care?
The candid qualities of Dan Bacher and his willingness to share the story of Speak Your Mind, keeping the focus on the patients, is a refreshing change of pace from the hard-sell of many entrepreneurs looking to exploit the marketplace and extract success. Bacher’s story of the difficulties in finding a sustainable business model offers insights into what makes Rhode Island an attractive place to be for an emerging startup: the collaborative nature of the state’s innovation ecosystem. Bacher’s willingness to engage students in the process of designing hardware and software and writing code as part of Speak Your Mind may prove to be a different, yet more promising path to sustainability.

PROVIDENCE – Dan Bacher, the founder of Speak Your Mind Foundation, is uncertain what his startup’s future direction will be.

Bacher briefly shared his concerns in a conversation with ConvergenceRI following the recent gathering of MedMates, held on Nov. 12, entitled “What’s the big idea?” focused on the ideation behind the creation of a company.

The MedMates panel featured Aidan Petrie, the co-founded and chief innovation officer at Ximedica, Andrew Mallon, the CEO of Calista Therapeutics, and Mark Treat, the founder and CEO of Nalari Helath, with Nick Adams, the co-founder and president of Care Thread, serving as moderator.

Bacher, who has been a constant presence in the background at MedMates, helping to organize the fledging med-tech sector cluster group, has as fascinating a story to tell as the entrepreneurs on the panel: the problems of scaling up an innovative concept, where the goal is not just wealth extraction from the market.

In an earlier interview with the reporter, Bacher described the Speak Your Mind Foundation as a spinoff of the BrainGate lab. “Our focus is on delivering communication solutions directly to end-users, as opposed to conducting neuroscience research and evaluating medical devices that directly interact with the brain,” Bacher explained in June of 2013.

The idea, he continued, “was actually born out of my experiences working as an R&D engineer at Brown University, where I regularly interacted with the participants enrolled in the BrainGate clinical trial.”

The mission of the foundation is to “create, distribute and support assistive communication technologies to those who are unable to effectively communicate due to neurological injury and disease.” Speak Your Mind works closely with clients to build a solution that meets their needs from the ground up, using off-the-shelf hardware.

The passion that Bacher brings to the task is heartfelt: “There is no way around the fact that the assistive technology industry is broken,” he told the reporter in an earlier interview. “In a world where incredible advances in technology make our lives more productive and interconnected, many individuals with communication disabilities have been left out of the conversation.”

Bacher said that he believes that “everyone should have the right to share their thoughts and feelings with their loved ones, to take part in their own health care decisions, and to plug in to our increasingly connected world.”

Bacher agreed to meet and talk with ConvergenceRI and discuss the conundrum that his nonprofit now faces. The conversation took place recently over dinner at Kabob and Curry on Thayer Street.

ConvergenceRI: Your business model – built on the patient-directed need to communicate, rather than the importance of creating a great new technological device – seems to straddle an entrepreneurial divide. It was not so much to exploit gaps in the market, but to fill the needs of customers, the needs of the patient.
BACHER:
That’s a fair point. It’s one of the hard lessons that I’ve learned. There’s a need to understand the health care system, if our strategy is to go directly to the end user, with a product or service.

People’s families [that we were dealing with] were often bankrupt, from all the other health care expenses.

If we could get out product reimbursed through the Centers for Medicare and Medicaid, that would be a much better option, potentially.

There are pros and cons to it, obviously.

I went through the exercise of really understanding [the reimbursement system], because the question of who pays is critically important, especially when you’re talking about health care related products.

ConvergenceRI: What is the status of Speak Your Mind? Have you decided to move away from it?
BACHER:
No, not completely, things are in limbo. We still don’t know what’s going to happen yet.

I think we’ve realized that the classic, nonprofit play, fully relying upon grants and donations, I don’t think it is scalable in a way that we can solve.

ConvergenceRI: How would you define the problem?
BACHER:
Enabling people who can’t communicate to communicate, using technology, in its most broad sense.

It’s challenging. The number of people who are unable to communicate is relatively small, from a market standpoint. But the bigger problem is that it is fragmented.

Everyone [of the clients] has their own abilities and needs, and the idea of building a product that can even hit a relatively large segment of the market is challenging.

There are probably other creative ways of thinking of other business models, where you can do well as a business but you can still do good by helping the disenfranchised patient population. I think we’re still searching for that.

We’ve talked to the right people, gone to people with knowledge and experience, and there have been some good ideas. Time will tell if some of it works.

ConvergenceRI: What have you learned?
BACHER:
We weren’t inventing a device; we were taking commercially available technology off the shelf, and building the code and the device.

We were approaching it from answering, what does the patient need, what does the patient want, and then [creating] a low-cost solution to make it personally designed. It wasn’t as if we were designing a machine that was going to cost tens of thousands of dollars and then spend three years getting it FDA-approved.

We were using off-the-shelf technology, building things that enabled people to communicate, personally.

Our approach is still the same. We’re fortunate that there are devices hitting the market, say for gaming, for market research, such as eye-gaze trackers. These devices used to cost $20,000; not there’s a $100 device being sold by a company that we can just take and use and repurpose it to help people with disabilities.

That is still completely the focus. Take that off-the shelf piece of hardware, and then create software that targets the abilities and needs of the individual, helping them to communicate.

The core of how we’re trying to serve that patient population is the same.

I guess the difference, the potential difference in the overall model of the company is: is that by itself scalable? Are there other margins that are larger, that are closely related enough to bring in revenue to allow the company to scale?

Can it stay a small nonprofit? Or is it more of a service model?

Or, if we can make the software free, open source it, and then do a high-level of customization.

ConvergenceRI: What are some of the barriers in a service model?
BACHER:
Many of the problems that people have with the current devices [are a result of the fact that] the support services for them are horrible.

As much as the technology is a component, the services are another huge piece of it, that we still have to think about.

It’s hard to scale up a service model.

ConvergenceRI: Could you pursue funding from a set of nursing homes, where you would be on call, and they would pay you to employ you to create personalized technology solutions and software for whatever the needs of the residents are?
BACHER:
That would be great. But here’s the central issue. How do you scale that? It takes a very specialized form of training to really understand assistive technology. You have to have some kind of technological knowledge, some kind of clinical knowledge, and some design knowledge. It’s a world that I’ve been living in for a while.

[The question is:] But how do we train dozens, hundreds of people to do that?

There are businesses that have some of that expertise; there are engineers that have some of that expertise. It’s kind of a very interdisciplinary skill set.

It’s one of the things that we’ve thought long and hard about. How do we get enough people into all of those facilities? How do we get people the right domain knowledge and expertise, in those locations, to work directly with those clients?

ConvergenceRI: What would happen if, as a pilot program, to prove the concept, you were paid a set fee, say $100,000 a year, or maybe more, to develop your team, to learn how such a service model could work across a platform of two or three nursing facilities?
BACHER:
We thought about going back to CMS. There are occupational therapists, and speech and language pathologists, some of which are trained in the system technology. There aren’t too many of them out there, but there are some. 

There is kind of an existing network of people clearly working on this problem.

So we thought, maybe the way to do it would be to train them in our technology – they would become certified in Speak Your Mind technology.

There might be models like that that allow us to work with the system to achieve our goal.

ConvergenceRI: What are the barriers?
BACHER:
So, let’s say the device itself, or the software itself, is not going to be reimbursed. But the service model is, working with the patient, or through the client recommending the service.

Maybe it’s pulling one off the shelf, this one’s going to work for you, or pulling it off the shelf, and tweaking it slightly, to meet the needs of the end user. It’s more of a service model, right?

And you figure out, how do we get the service reimbursed and paid for. I think maybe there’s some happy medium, too.

[To do that], the way that CMS reimburses for what’s called a speech generating device is hopefully going to change.

Right now, there is this insane rule, where they will only pay for what they consider to be a dedicated communications device.

What that means, to give you an example: they will pay for a $15,000 device, made by one of these companies, which is essentially a tablet with a camera and some software on it.

They’ll pay for that, they would not pay for an iPad with a camera on it, which is essentially the same thing, because they don’t want to pay for an entertainment system.

To put it another way, the [device] that they sell you – they actually block out all other features of the computer.

They prevent you form doing some of the things on the computer that you actually want to do, in order to get reimbursed.

How insane is that? The whole point is to give someone access to a computer, to communicate with the rest of the world.

Basically, you can type a message with their software, but you can’t send it to anyone, because they’re not paying your Internet entertainment bill.

They may mange to change that ruling soon, hopefully. [Editor's note: CMS recently announced that they had rescinded the rule, so that patients would not longer be prohibited from accessing other technologies such as email and the Internet from speech generating devices.]

instructed its contractors to rescind the "coverage reminder" that would prohibit people with ALS from unlocking Speech Generating Devices (SGDs) and accessing other technologies such as email and the internet 

But it’s these very, very antiquated rules that still are in existence, and people are suffering because of it.

ConvergenceRI: You’ve been working very closely with MedMates, often behind the scenes. How do you view the way the organization is evolving?
BACHER: At the highest level, I think it’s great. For example, Betaspring serves a certain group of entrepreneurs – many of those clearly don’t really address health. It’s just a different beast.

I think it’s been, especially for me, being in the medical world, a great networking opportunity. Anytime you get a chance to rub elbows with other people, people who you can learn from, I think it’s great.

Even some of the socially oriented events have been great, because you just show up, have a beer, and talk to people.

The current workshop idea is great, too. It’s structured – the journey of a health tech start up – it takes you along that path.

I think it’s been great for students, especially those who want to get exposure to the sector. And, also, for more experienced people, who have a chance to do networking.

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