PROVIDENCE – Buried in the news release put out by Sen. Sheldon Whitehouse on Thursday, Dec. 22, 2022, touting the $87.2 million in direct investments delivered by the Senator, as part of the 2023 Omnibus Funding Appropriations legislation, some $750,000 would be going to the Rhode Island Quality Institute, to upgrade the state’s public health infrastructure.

As the new release detailed, the R.I. Quality Institute operates CurrentCare, the state’s health information exchange. The $750,000 investment will allow “the Rhode Island Quality Institute to purchase hardware that will increase patient data capacity and support the conversion and incorporation of electronic health data, while ensuring patients can opt out if they choose.”

The latest federal investment in the infrastructure of the state’s health information exchange marks the continuing evolution of CurrentCare from an opt-in to an opt-out data system, a change that is at the center of efforts to build out a more robust data management system for the delivery of health care in Rhode Island.

“The best health care is built on reliable access to trusted health data,” said Neil Sarkar, the president and CEO of the Rhode Island Quality Institute, in the news release. “This funding will enable the upgrade of essential health data infrastructure to ensure the highest quality care for all Rhode Islanders.”

The week before the federal investment was announced, ConvergenceRI sat down with Sarkar to discuss the state of the health care data landscape and the challenges of moving CurrentCare to an opt-out system. In addition, the Rhode Island Quality Institute had recently moved its offices to 315 Iron Horse Way, adjacent to CommerceRI offices, during a time of continued upheaval when it comes to defining workspace and office space in the aftermath of the continuing COVID pandemic.

The wide-ranging discussion explored the challenges of managing electronic health care data during a time when the health care delivery system has been disrupted. Sarkar stressed that “health care is about an individual’s health journey,” and that the management of electronic health care data is about “storytelling.”

The continued evolution of CurrentCare and increased opportunities for regional collaboration with other New England states positions Rhode Island positions the state’s health information exchange to function as an important “utility” for the health care delivery system.

“I hope that I am never proven wrong on this fact – which is that health care will always be a human endeavor, one that requires humanity and empathy,” Sarkar told ConvergenceRI – articulating a vision of hope during a time when so much of the health care delivery system appears to be in crisis.

Here is the ConvergenceRI interview with Neil Sarkar, the president and CEO of the Rhode Island Quality Institute, talking about the future of health care data management in Rhode Island as a way to improve health outcomes.

ConvergenceRI: First of all, how do you like your new digs?
SARKAR: We love it. We love it here. It is really nice to be in a brand new place. We are still navigating what it means to be working in a hybrid place. So, our philosophy has been: the space is here; if you want to use it, come and use it. People come and use it. We are not forcing people into the office. We have some mandatory meetings. But, by and large, people come into the office on a voluntary basis.

ConvergenceRI: Is it advantageous to be [located] next door to CommerceeRI?
SARKAR: People have asked that. We haven’t leveraged that in any way. I’m sure that some day, there might be some opportunities there. But, right now, that is not where our focus is.

ConvergenceRI: We are moving into the next state budget season. I was wondering whether there were priorities of what you would like to see in the upcoming state budget to support the ongoing work that you are doing?
SARKAR: I think we have talked about this in the past. Our budget has never, at last as long as I have been here [at the Rhode Island Quality Institute], been part of the Governor’s budget. We are not part that process, at present. Would I like to see some of that change? Maybe.

I think there is an opportunity as we really do become a core service for the entire state to see us as not just as something “nice to have,” but rather as a “must have” for all Rhode Islanders.

ConvergenceRI: I believe the last time we spoke in person, briefly, was at the reveal of the R.I. Life Index. [See link below to ConvergenceRI story, “Taking charge in health care.”] I was curious to know how you see the current landscape of [health] data now. And how it is changing?

I myself have been trying to get my hands around it, to wrap my arms around it, because there is all this seemingly really good data that is being produced, but I don’t know where it intersects. When it comes to health care, we are becoming even more dependent upon good data, in my opinion.
SARKAR: I think it is always important to remember that the first focus of the kind of data that we have and we support is for the core practitioner – and their need for that data to provide the best care. And, that has always been – and will always continue to be – our first priority.

Second to that, and it is not a distant second, is how we can leverage the data that we have as an asset to understand what we are doing “great” in health care – and where there are opportunities for improvement.

I think there are lots of opportunities for that [improvement], I think the R.I Life Index is a great [slice of data]. It is a limited sample, but it gives us a really good insight into the kinds of things that we should be looking at.

ConvergenceRI: My perspective has been to try and figure out the best way to talk about the uses of data. I often feel like there is not enough good reporting about what is going on in health care. People often tend to “misappropriate” the information; they think that they know something when they don’t.
SARKAR: The hardest part in our business is “Dr. Google.”

ConvergenceRI: What?
SARKAR: Dr. Google. Everyone thinks that health care is about conducting a simple Google search. [It’s not.] The last couple of weeks, everyone has been talking about ChatGPT [a chatbox launched by Open AI in November of 2022 that can answer questions and write essays]. Or, that AI [artificial intelligence] is going to be as good as people responding.

But, actually, I hope I am never proven wrong on this fact: Which is that health care will always be a human endeavor, one that requires humanity and empathy.

The best computers, and the best AI, you can teach it all you want. But there is still something about the human interaction…

ConvergenceRI: …that health care is about human relationships.
SARKAR: …Yes, health care, I remind folks, in all contexts, is about an individual’s health journey. Health care is about an individual’s health journey.

It is not about whether a person got sick, or whether they became healthy. It’s about tracking an individual who, through certain points in their lifetime, where they need help in getting services. Health care is about providing [those services] to them.

They may not want help. Or, they don’t want to interact too much with the health care system. We would want everyone to be healthy. But, the reality is, that doesn’t happen.

Health care – and what we do – is about cataloguing that story, and making sure that the right people for that story are available to the storyteller, which is the clinician, to help them figure out what the next chapter will be.

ConvergenceRI: Can you talk a little bit more about what you mean by storytelling? Storytelling is quintessential to my reporting, which is to say: our own personal stories are our most valuable possession we have, and that sharing those stories is what makes us human. Underneath everything that I do at ConvergenceRI is related to the idea that I am telling stories.

Hopefully, those stories resonate. And, if people share those stories across their platforms, then we can all discover that we live in the same neighborhood.
SARKAR: I would make a slight modification. In health care, the storyteller is the clinician, who is interacting with the patient. They start out with: What will be the next chapter? And, the patient becomes an active participant in their own story.

We call this patient engagement; engaging patients in their own stories leads to, generally speaking, better outcomes. And, there is lots of data to support that.

What we don’t want to have happen, however, is that every individual story be shared with the details that allow us to re-identify an individual. What we want to do is to identify archetypal stories, so that when an individual has these seven things happen, and they are on these two medications, if you do this, most of the time, this will be the outcome. If you do something else, this will be the outcome.

So, that’s the kind of story capture and gathering that we work on in our data statements. What clinicians are really focusing on, what we call it in medical school: We are teaching what are the kinds of stories that you will see as a practitioner of health care that you need to be aware of.

ConvergenceRI: How does that change the storytelling, with the push toward digital health?
SARKAR: Digital health is just a new term for something that we have been doing for more than 50 years.

ConvergenceRI: Can you explain what you mean?
SARKAR: Digital health, e-health, mHealth, or health IT, they are all the same. Digital health is a more contemporary term for things we’ve been doing in health care from the moment we thought about using a computer, from the very first application in health informatics, we were asking: How do we better engage the patient in the story, through these computers?

ConvergenceRI: It is often still very difficult for the patient to navigate the system. I always use myself as an example. I am someone who is pretty well versed in health care and what is happening, but I find myself consistently frustrated trying to be able to leverage what I know, to make the system work.
SARKAR: It’s very complex.

ConvergenceRI: I can leverage my knowledge; I can leverage my relationships. But not everybody can. Sometimes there appears to be no common language.
SARKAR:I think that consumer engagement is such a difficult thing. Without a doubt, at least in my mind, health care remains a “have” versus “have-not” [situation] – whether you have the right network, whether you have the right resources, versus whether you don’t.

My view – our organization’s view, is it shouldn’t be that way, at least from a data perspective. So, wherever an individual seeks care, the clinical team should have access to all the relevant clinical information.

I think it is embarrassing how difficult it is for us to do that right now, generally speaking, not just for the care team, but also for the patient. At the Rhode Island Quality Institute, we do both. We provide data to the care team and the patient. We are less focused on big organizations but more on the small organizations, in places where care can be more challenging, where the practitioners really are burning out, all across the state.

At the same time, the patients who are interested and willing, they can access their own data through CurrentCare. That came out sounding like a commercial, but it wasn’t meant to be.

ConvergenceRI: Can you give me an example of how the system works, and works well?
SARKAR: In the case of CurrentCare, we have many out in the community who depend upon what we provide to the clinical team, whether it is a direct feed of data right into an organization that is an electronic health record, or whether it is something that is coming into our clinical viewer system and looking at the patient’s chart, or reporting on that information.

We work to standardize the data, so that the medication, for instance, will be standardized, for patients and for all interactions that are available through that portal.

ConvergenceRI: How can we leverage the data we have in health care to have a more positive impact on the flow of scientific information?
SARKAR: I think some of the challenge in health care in general is that none of us know the complete answer. That is what makes it so hard. I think that there is a lot of unknown, and that is one of the major things that we train practitioners – the doctors, nurses physician assistants, the pharmacists: to know what you know, and to know what you don’t know. And, when you don’t know, it’s OK to say, you don’t know. And, also, what are the questions that you need to ask to help you figure out, to get you on a path of knowing.

And, there may still be conditions, rare conditions, that fall below the realm of standard guidelines. There will always be exceptions. Unfortunately, that is the reality of health care, the reality of medicine, and the reality of life. I think it is hard for folks to fully understand that there is a lot of nuance and things that we just don’t know in health care.

ConvergenceRI: Can you talk about the team that you have assembled here?
SARKAR: Our team is focused on making sure that the connections are in place with, from a technical perspective, relationships with the community, engagement with payers, and engagement with provider organizations,

I have a team of very good listeners, who are listening to the community. What are the things that people wish we could do?

We try to do whatever we can. And then, with the business side of the team, that is really important, to make sure that we are doing things in the right way, fully compliant with the law. I am so proud of my team and everything that we do.

We believe in the philosophy that we are a family first. That means we always have each other’s back, and that we are always there to help each other. Because, even in our business, there are many things that we know, but there is a lot that we don’t know. And when there is something we don’t know, we work together, and try to sort it out.

ConvergenceRI: How is the collaborative work with Vermont and with Maine going?
Are there opportunities for more collaborations moving forward? [See link below to ConvergenceRI story, “New health data highway launched in New England.”]
SARKAR: The focus is on New England. Vermont and Maine are like us, in being older, helath information exchanges, with a history. We are looking at some time of middle of next year to put out a strategic plan: here are the things that we are working on together, where we are going as a region – and what it means in terms of the updated health data utility function that we provide for each of our communities.

ConvergenceRI: What is happening with Massachusetts?
SARKAR: I can’t speak for Massachusetts or New Hampshire. Neither of those two states currently have a state-endorsed health information exchange.

ConvergenceRI: At one point, the Massachusetts Technology Collaborative had tried to create a Massachusetts-based health information exchange, about 10 years ago.
SARKAR: The Mass. Health Information Highway or Mass. HIway, which still exists, is very different from ours. It’s a highway where data can be exchanged. But there was no curation or amalgamation of data to support population initiatives. That was just never in their scope of mission.

ConvergenceRI: Another interesting point of potential data collaboration in Rhode Island involves what is happening with ONE Neighborhood Builders, which has created its own free wire mesh WiFi system, serving the neighborhoods of Olneyville. It has been operating for two years, and they are expanding it.
It was created as a way to deal with the health emergencies created by COVID – what people in the neighborhood said that they wanted was a way to connect with schools, and with their health care providers, , and with their work, and they couldn’t afford the internet connections, because they were too expensive.

In response, ONE Neighborhood Builders created their own innovative, free wire mesh WiFi system. Similar systems are now being developed in Central Falls and in Newport,

It may be two entirely different ships passing in the night but my question is: what are the opportunities for collaboration with a health data system that could be accessed at the neighborhood level?

Is it possible to take what you have learned in building out CurrentCare to assist neighborhoods in creating connected data links regarding those communities with the greatest social disparities?
SARKAR: It sounds really interesting. It’s not something that is on our radar screen. One of the things that we really need to be careful of is how much information we can share about a community while protecting the right to privacy of the patient. Health care is still a very personal thing is still a very personal thing. We would probably want to engage with the R.I. Department of Health.

ConvergenceRI: The R.I. Department of Health is already involved, in some ways, because ONE Neighborhood Builder serves as the backbone agency of the Central Providence Health Equity Zone.
SARKAR: I am known for the Sarkar “one”: I focus on one thing and do it really well.

But I would be happy to engage with the Department of Health in a conversation about p;otential collaboration.