PROVIDENCE – The moment of Zen in the interview with Neil Sarkar, Ph.D., the president and CEO of the Rhode Island Quality Institute, occurred at the very end of the conversation, a lengthy journey that had traveled down a number of data highways and byways in Rhode Island, talking about how best to translate health data into solutions, as the state has sought to navigate the stormy disruptions and crises in health care delivery brought about by the COVID pandemic.

When asked what strategies he thought could be deployed to address the growing problems around the proliferation of misinformation and disinformation, Sarkar said, bluntly: “If we could deactivate Dr. Google, life would be so much easier for all of us who work in health care.”

Pow! Pow! Pow! There it was – a succinct diagnosis and cure about how to cut down on the wrong-headed health misinformation that has been populating and metastasizing throughout online social media. In Sarkar’s opinion, patients were almost always being misguided by the wrong-headed analyses found in the diagnoses around symptoms being proffered up by the Google website.

Rising to the defense of science and medicine, Sarkar said: “We are not trying to pull a fast one. We do make mistakes; there is no doubt about that. We are working as hard as we can, with the best information we have. But there is a lack of trust.”

The solution, Sarkar said, expanding on his answer: “I think that we need to re-instill trust in medicine and in science.”

Sarkar candidly admitted that he didn’t have an easy answer about how to resolve the continuing issues around the lack of trust. “I honestly do not know what the answer is, but I think trust has to be re-instilled into our society, in our nation. Otherwise, I think the future is very, very bleak for all of us.”

Moving from opt-in to opt-out
When Sarkar talks about health care data in Rhode Island, people should listen. Sarkar is at the helm of a major transformation now underway when it comes to the gathering, collecting and synthesizing of electronic health records in Rhode Island.

The R.I. Quality Institute is the home of CurrentCare, the state’s Health Information Exchange, which is now moving from an opt-in to an opt-out system, thanks to recent legislation enacted by the R.I. General Assembly.

Before, residents had to decide to opt in to join in the shared platform of electric health records as part of the state’s Health Information Exchange. In the future, residents will be considered participants in the Exchange – unless they decide to opt out, creating more, better opportunities for clinicians to share patients’ electronic health care data in real time. [See link below to ConvergenceRI story, “Toward a more inclusive health information exchange.”]

Sarkar also serves as the director of Biomedical Informatics at the Center for Clinical and Translational Science at Brown University. Here is the ConvergenceRI interview with Neil Sarkar, Ph.D., a data scientist who has his finger on the pulse of health care data in Rhode Island.

ConvergenceRI: What is the status with CurrentCare moving forward, from opt-in to opt-out? Where are you in terms of progress on that effort?
SARKAR: We have to follow the state’s lead. With the legislation having passed, there is now the development of the regulations that will basically lay out the rules of the road of how opt-out needs to be implemented.

The state has included us in the early discussions. It is going to be driven very much by community-based input, trying to get as many stakeholders at the table, to make sure that how opt-out is implemented is done in a meaningful, understandable way. From our perspective at the R.I. Quality Institute, it is an opportunity to highlight the value of opt-out for anybody who receives health care in our state.

Right now, the proverbial ball is in the state’s court in developing the regulations. They are moving pretty quickly, so we should see something in the next year or so. Once [the regulations] get finalized, [working in] parallel to that, we at RIQI are looking to set up the technical infrastructure to enable those changes.

Obviously, we are going to need more disk space. There are going to be more connections, larger connections, that allow for essentially a doubling of data, a growth of 150 percent data flowing through the Health Information Exchange.

What we are doing is working with the state in the discussion of the regulations, making sure that whatever is put in place from a regulatory perspective, it does not cost our community more money – and that it [does not become] a unique solution that does not exist anywhere else.

We are one of very few organizations across the country that have implemented opt-in in the way that we have, which is extremely strict, and it actually ends up costing a lot of money to maintain.

We are looking at what will be the value, in terms of a return on investment, in making the change from opt-in to opt-out, in a way that can actually provide more services to all Rhode Islanders, in a truly cost-efficient way.

[As] we do is this, we don’t [want to] look at just trying to get the project done; we are looking at how much the project is going to cost us in 10 years from now.

If we can’t answer that question, or provide a line of sight to answer that question, then we are not asking the right questions; we are just trying to solve today’s fire.

ConvergenceRI: CommerceRI is moving ahead with plans for a partnership with Northeastern University around the creation of a regional collaboration to support biopharma manufacturing. [See link below to ConvergenceRI story, “Northeastern U., RI, on verge of grant to foster regional bio-pharma industry.”]

Are you familiar with that proposed collaboration? Have you been brought into the conversation? Would you agree that bio-computing and informatics needs to be part of the conversation?
SARKAR: I absolutely agree that informatics and bio-computing and computing in general need to be part of any conversation that involves this level of sophisticated analysis.

We have not been involved with any of these discussions. In fact, I have only seen the headline that this was happening. I don’t know the full details of it. Maybe Brown or URI are involved at some level. There is a lot of academic capital here in our state.

One reason the story did catch my eye was that I was wondering why the state of Rhode Island was partnering with a non-Rhode Island institution. I hope, when the time is right, that there is an engagement with us at the R.I. Quality Institute, in terms of the data assets that we have. There isn’t a more comprehensive view of health care for Rhode Island than what we have.

ConvergenceRI: I recently interviewed Martha Wofford, the president and CEO of Blue Cross and Blue Shield of RI… [See link below to ConvergenceRI story, “Health is so much more than health care.”]
SARKAR: She is wonderful.

ConvergenceRI: …Much of the interview was focused on the latest edition of the R.I. Life Index and the trends identified by the survey data. What do you think are the best ways to integrate the data findings from the R.I. Life Index with other data trends? Where do the trends intersect? Does there need to be a way to coordinate the different data streams? Is that something, not that you need to take on any more tasks, that the R.I. Quality Institute could do, coordinating the integration of health data in Rhode Island?
SARKAR: There are lots of data that need to be integrated, that should be integrated and are not integrated. [It is a situation] that sets us up for catastrophic failure, without a doubt.

And, in the area of social factors that influence health, I think we are finally beginning to understand the importance of integrating many of these things.

The RI Life Index is a wonderful tool. In the interview, Martha pointed out that it was based on the views of 2,500 or so individuals. That is a very valuable sample size, a little bit more precise in terms of the kind of questions that are asked in the more generic Behavioral Risk Factor Surveillance System survey.

There is an opportunity here to look at what is going on statewide, relative to this kind of information, coordinated with the Unite Us [Rhode Island] platform, that the state is in the process of deploying, that will probably be the first piece of that puzzle. [Editor’s Note: The platform is described on the United Us website as a shared technology platform that enables participants to send and receive electronic referrals.]

For us, at the R.I. Quality Institute, it needs to be a natural fit for electronic health records data. The problem with any type of survey data is, for us, if we can’t link it to an individual, it is really challenging to see if there is an actual qualitative relationship that might be worth pursuing.

That becomes a challenge for us. We can definitely look at population-level trends and the like. But, for what we are trying to look at, it has to be something truly clinical actionable, or actionable from a social services perspective. We can’t really do that from survey data.

But, I think there is a hope that there will be dialogue between the Rhode Island Life Index and the Unite Us team working in Rhode Island, so that when there is an opportunity for interface and interchange with Unite Us and CurrentCare, this type of data from the Rhode Island Life Index can be used as a guide post for what we should be looking for, to make sure that we capturing the information.

Not to further amplify what we know are the challenges, and there are lots of ways to underscore the challenges we have with housing and transportation, but working closely to how do we identify the individuals who really need access to the right social services to address those particular barriers for them to get access to the highest quality of care.

ConvergenceRI: I recently conducted an interview with Dr. Jill Maron, the new director of Pediatrics at Women & Infants Hospital, talking with her about her research, using saliva assays to identify the biomarkers in newborns from their immunological responses, in order to determine the best course of treatments, including whether or not to prescribe antibiotics. [See link below to ConvergenceRI story, “on the cusp of a revolution in the care of newborns.”]
Maron is also using the saliva assays in another national clinical trial to conduct whole genomic sequencing for infants who are very sick, as well as collaborating on a third clinical trial looking at how the brain’s immune system is triggered in newborns that have been exposed to opioids.
In our conversation, she talked about how a baby is not an algorithm, and how important it was to see babies as individuals, with different needs. Could you weigh in on the importance of that observation?
SARKAR: I will do my best. With pediatrics, it is embedded in this specialty that children are not just little adults. Pediatricians really understand the importance and value of what we nowadays call precision medicine. Knowing that we have a pediatrics leader in Rhode Island who is looking at precision medicine and leveraging genomics in a meaningful way gives us hope.

There is a caveat here, and that is the fact that genomics are not going to be a panacea for all of our medical solutions, either.

We need to identify for which neonates, which babies, would benefit from understanding their genomic profile, correlating that with other clinical patterns. That will allow for us to identify populations and sub-populations where it makes sense to use genomic data, in order to develop the right precision tools.

With regard to opioid use disorder and the impact on pregnant women who may have abused opioids during their pregnancy, there is a lot of work to be done in that space. I think it is exciting to have a pediatrician-in-chief who is thinking about things like this, I think the future is very, very bright.

ConvergenceRI: There seems to be a “disconnect” in how we use data when we are confronted an urgent or an emergent situation. For instance, there is no lack of data to show that Rhode Island is not keeping up with the growing needs for mental health and behavioral health services.

We have data that shows how the failure to increase insurance reimbursements paid to providers has led to critical workforce shortages, forcing outpatient service providers to cut back. Similarly, the data for the current census of hospital beds shows that for behavioral health and mental health needs, there are not enough hospital beds available for patients. How do we move from analyzing the data toward a plan of action?
SARKAR: Behavioral health and mental health are at a tipping point, nationally and locally. We knew, at the beginning of the pandemic, that there would be challenges.

We already had a pretty shaky system here in Rhode Island; R.I. BHDDH has done the best they can, but they have had a lot of challenges. At the state level, the pandemic has made things come to a head. Within key care facilities, like Hasbro Children’s Hospital and Bradley Hospital, there are just not enough resources, period.

I think that the problem is, clinically, everybody is trying to do the right thing, we are trying to keep up. I think that all the providers are doing their hardest to keep up with the situation.

We worked very closely with R.I. BHDDH to develop what turned out to be, from a technical perspective, a very simple thing: It is a website that keeps track of the open beds, open behavioral health beds in our state. Which isn’t a huge technical undertaking, but it was a really important piece to address.

So, BHDDH came to us and said: We just need to know if there is a bed available; when someone is looking for bed, who should they call – rather than just cold calling a number of facilities and get turned away.

Now, we can actually get patients to the treatments that they need, as fast as we can. That is one example of where we have a solution we developed that is very direct. I think we need more of that.

We don’t need any more analysis, Richard, to tell us that there is a problem. We are in the midst of a crisis, the pandemic within the pandemic, if you will. The weight on mental health care has been very significant, in our country and around the globe.

I think we need to work with community organizations, before individuals become patients, to give them the tools and resources so we get less people admitted at an acute level, and more people into treatment earlier.

ConvergenceRI: When did you do this work for BHDDH? When was it commissioned, and when did you finish it? And, how long has the new website been in operation?
SARKAR: I want to say it was almost a year, a year and a half ago, when we finished it. It is called Rhode Island Open Beds [RIBHOpenBeds.org]. RI Open Beds is a heavily used resource now, by the behavioral health community.

This is a simple, technical solution. It is just a website that has a listing of all the sites that person can go to. And, you can look at it and see very clearly, there are very few open beds in our state right now. Which means we are at the breaking point.

ConvergenceRI: We have all this data that has been produced by the state about COVID. We know on a regular, updated basis, how many case there are, new diagnosed cases, how many deaths, how many hospitalizations, .how many tests have been done.
Folks in the recovery community have been asking: What about us? We have been in the midst of an epidemic for years. In the last year, more than 100,000 people have died. And, they say to me, we still don’t see that same type of data analysis and transparency available for Rhode Island.

Are they right to be upset? Is there a simple solution, similar to open beds, to create this type of data analysis, if there was money to do it?
SARKAR: I think that if the money is there, there is definitely the will, from an organizational perspective, that this is something that we care deeply about.

I think yes, the current crisis that we are dealing with is COVID-19. What I hope is that what we have learned about infrastructure, we can put in place that can be generalized.

I think the opportunity now is for us, I am cautious about what I am about to say. I truly do believe it, that the pandemic will end, and the end is somewhere in our future, and when it ends, I hope we have learned how to build infrastructure nimbly, efficiently, in a way that is solutions-driven.

I think the next question is: what are the conditions that we focus on? I personally hope mental health is near the top of that list.

I also think we need to pay a little more attention to obvious ones, that we put a lot money into, but we do not have a lot of robust infrastructure. Cancer surveillance, for example, especially in challenged communities, is something that we don’t do a very good job of. And, cardiovascular disease, focused on earlier in the progression of the disease, with hypertension management. These are things that we do not do a very good job of.

And, understanding medications, medication use, medication misuse, I think, at least to me, are top of mind. I hope the community has an opportunity to create such a list that then organizations like RIQI, in partnership with others, can develop solutions.

I think we have developed a framework and solutions for one condition, being COVID-19. I think the opportunity is in front of us, to take advantage of what we have learned and turn these same kind of tools, with the same amount of vigor, onto other conditions.

I think it is going to be up to the community. And, it is going to come down to investments. As to where those investments come from, I don’t have the answer to that.