Delivery of Care

Toward a more inclusive health information exchange

An interview with Neil Sarkar, president and CEO of the R.I. Quality Institute, as he shepherds the change in CurrentCare from an opt-in to an opt-out system

Image courtesy of RIQI website

CurrentCare, the state's health information exchange, will be moving from an opt-in to an opt-out system of enrollment.

By Richard Asinof
Posted 8/2/21
A monumental sea change will soon commence in the way that Rhode Island collects and shares health data as part of CurrentCare, the state’s health information exchange, in moving from opt-in to opt-out, creating a much broader range of participation.
Given all the disinformation around scientific health data being promoted on social media platforms and Fox News, what is the best messaging to use to support the change to opt-out for participation in CurrentCare? Will the R.I. General Assembly provide the necessary funding to ensure that the next version of CurrentCare is successful and sustainable? What is the best way to capture in data the way that toxic pollution is a factor in numerous chronic diseases in Rhode Island? Will Rhode Island follow the examples of other states such as New Jersey and fund the replacement of all lead water pipes?
Jane Hayward, the long-time executive director of the Rhode Island Health Care Association, representing community health centers in Rhode Island, has announced her retirement. But, for some reason, she has apparently decided not to make her decision widely known publicly.
A search committee has been convened to find her successor. Hayward has been serving as the co-chair of the health stakeholder group convened by the Rhode Island Foundation to develop a 10-year plan to make Rhode Island the healthiest state in the nation. It is unclear if she will continue in that role after her retirement, and if not, who will replace her.
Hayward also apparently played an integral role in the recent visit by HHS Sec. Xavier Becerra when he led an impromptu roundtable at Blackstone Valley Community Health Care in Central Falls on July 16. Exactly what her role was is still unclear, because Hayward has refused to respond to questions by ConvergenceRI about what her role was, both in person at the event and afterward, in refusing to respond to an emailed question.
For all the important conversations occurring about the future delivery of health care in Rhode Island, from hospital mergers to Medicaid spending to data collection to the scandal at Eleanor Slater Hospital, one of difficult sticking points has been the reluctance of some in positions of power to engage in forthright conversations – as if those conversations were the privilege of the elite few and did not need to be shared.
In any push toward achieving health equity and having uncomfortable conversations around racial equity in Rhode Island, access and inclusion to be able to participate in policy discussions still remains one of the biggest obstacles, breaking down the barriers of the walls of elitism.

PROVIDENCE – In the midst of the dramatic rise of infections from the Delta variant of COVID-19, the importance of capturing and sharing accurate data when it comes to health care delivery about the coronavirus pandemic has never been more critical.

The nation is struggling to comprehend the complex metrics around vaccine protection – and the correlation of the growing risks of being unvaccinated, which has led some to describe the latest surge in cases as a “pandemic of the unvaccinated.”

In turn, there is a growing need to combat the alarming swell of misinformation being propagated on social media platforms, perpetuated in part by Fox News and by many Republican members of Congress, who keep sowing doubts around the science behind the practice of public health and vaccinations and the benefits of wearing masks – often with the same zeal that some folks once fought against wearing seatbelts and the dangers of smoking in public.

One of the biggest hurdles, it seems, has been the deliberate effort to undermine the science behind public health. The problem is not so much with the scientific health data, it seems, but the way in which that data is communicated – and then distorted by some for political gain.

A huge sea change
Here in Rhode Island, the R.I. General Assembly took the momentous step this past session in changing the legal framework for the state’s health information exchange, known as CurrentCare, from an opt-in to an opt-out system, preparing the way for a more inclusive databank of electronic health records.

Translated, it means that CurrentCare, which now captures the health data for about one-half of all Rhode Islanders, will soon move toward much greater participation from residents, joining with most of the other states in the nation in building out the health data system through an opt-out process.

The expansion of CurrentCare, according to Neil Sarkar, the president and CEO of the Rhode Island Quality Institute, the quasi-public organization that manages CurrentCare, promises to serve as an important tool in promoting health equity by ensuring that all Rhode Islanders can access the benefits of having their health care data shared on a common, secure data platform.

“Many of us, myself included, have been very critical of health care in general in terms of its lip service to health equity versus what actually is being done,” Sarkar told ConvergenceRI in a recent interview. “It took a pandemic,” he continued, “for us to really [understand] that health care is not always equitable, and there are portions of our population that don’t have regular access. It is really important to emphasize that health care is not one-size-fits-all.”

Health care, Sarkar said, “is dependent on culture, on context, on understanding and acceptability. I think we saw all of that play out in the pandemic, and I hope we’ve learned some important lessons. CurrentCare, I hope, will be front and center in that discussion.”

The blur of history
One upon a time, Rhode Island was one of the national leaders in establishing a health information exchange, under the leadership of then-Attorney General Sheldon Whitehouse, who shepherded through the creation of the Rhode Island Quality Institute to manage the new exchange. The decision was made to make the health information exchange an opt-in process, where residents had to choose to participate.

The concept was that CurrentCare would serve as the central repository of patient data that could be shared across platforms to allow providers to view a patient’s medical records in real time, integrating the health IT data at the point of care, in order to avoid unnecessary and costly duplication of lab tests, imaging, and medications and, at the same time, improve the quality of outcomes.

The initial president and CEO of RIQI was Laura Adams, who served in that position until 2019, when Sarkar succeeded her. Since then he has played an important role in shepherding through the change to an opt-out system.

As ConvergenceRI has reported previously, Sarkar is well aware of some of the limitations of deploying health care data. [See link below to ConvergenceRI stories, “Crunching the complex data in health care,” and “Dishing the dirt on data with Neil Sakar.”]

“Every HIE [Health Information Exchange] in the country, every organization that runs an HIE in the country right now, has the same problem,” Sarkar said. “We’re able to provide some data, most of the time, in a format that a clinician is willing to accept.”

Sarkar talked about what made medicine so difficult, from a health data perspective: “If medicine were easy, meaning from a data perspective, if we could say that everything that we need to know about this individual is actually recorded in a chart – I don’t care if it a stone tablet or on paper or electronic. And, if I just take that chart, and I give it to someone, and all that information about an individual is going to be transmitted, there is not enough time for a clinician to really do that.”

Here is the ConvergenceRI interview with Neil Sarkar, the president and CEO of the Rhode Island Quality Institute, the organization that manages Rhode Island’s health information exchange, CurrentCare, on the cusp of it changing from an opt-in to an opt-out system of participation, at a time when health data has emerged as the crucible of future care.

ConvergenceRI: What exciting news, after how many years, that you finally got the legislative changes needed to move to opt-out rather than opt in.
SARKAR: It is a very big deal. We are very excited.

ConvergenceRI: How would that work? If people haven’t signed up for CurrentCare, do they, all of sudden, become part of CurrentCare? What is the transition?
SARKAR: There are a lot of details that still have to be worked out. This is the first step, which is the change in the law. The next step is sorting out the regulatory things that need to be discussed by the state, and then [managing] the technical pieces.

A changeover like this is not just like you flip a switch and magically, all the data flow in. We have to make sure that we are doing this in the right way for patients. I like to think of this [change] as that we are moving toward an informed opt-out.

And, [to do so] in a way that the patients remain engaged in a process and they understand what that means. How we define and understand what that process is will mean a lot of discussion with community members, with health care providers, and others in the community, to make sure that we are doing this in a right way.

Because we truly believe – and most of those in health care that I have interacted with believe – that this will be a huge benefit for patients, and patients need to understand that.

ConvergenceRI: Is it going to take more money to accomplish this? Did the R.I. General Assembly provide you with more money to do this?
SARKAR: At this time we have not had discussions about how much money would be available and where those funds would come from.

The first part is figuring out how much it is going to cost. So, we have been opt-in for so long that there is a lot of technological things that had to be done that are integrated into the system that will be pretty [important] to change as we keep the information exchange live.

This is that proverbial scenario where we are flying at 50,000 feet and we realize that we have to change all four of the jet engines at the same time. So, it is not an easy endeavor.

ConvergenceRI: Is that the curse of living in an interesting time?
SARKAR: [laughing] Yes. I think, nonetheless, it is long time coming. I think that Rhode Island, as a whole, should have no regrets about how we got here and why we were opt-in from the get go.

I wholeheartedly believe it was the right decision at that time, because health information exchanges were new. We have learned a lot.

For a long time, we led the nation because we were opt-in. And now, we are catching up with where most of the nation is now, opt-out, and we are joining that group.

I think it is exciting, I think it is also a little daunting, because we have a lot of catch-up to do, in terms of types of systems you have to put in place.

So, we are talking to our colleagues across the country, especially those that have shifted from opt-in to opt-out. I think we have a lot to be proud of here in Rhode Island in terms of what we accomplished under opt-in. But I think that we will do so much more for our community as an opt-out health information exchange.

ConvergenceRI: Clearly, one of the things that the coronavirus pandemic has challenged everyone in health care delivery has been about the increased demand for data collection and data analysis – particularly around testing, vaccinations, and symptoms.
The flow of information has been enormous. How is that increased demand for more, better data likely to impact your decisions moving forward about how nimble the new opt-out health information exchange has to be?
SARKAR: That is an excellent question. One of the areas we were challenged with [by the pandemic] was because we were an opt-in, public health information exchange, we were only half-helpful to the R.I. Department of Health in the current pandemic.

We look forward [to when] we will have access to more test results, more vaccine data, more symptoms, and more trend analyses that can be done to support the Department of Health in their public health charge.

During the current pandemic, we were able to support the Department of Health with the data that we had. It helped make some analyses more complete, because we had portions of data that other entities could not easily provide.

None of the security provisions that are in place are changing; the only thing that is changing is whose data will actually be in the health information exchange by default.

ConvergenceRI: My primary care practice provider works through Lifespan. As a result, whenever I get blood tests, I get access to the results, directly sent to me through my secure account portal.
However, that data is not easily shared across the transom of other health care providers. For instance, it is not easily accessible to the team of neurologists I am being treated by out of the Beth Israel system in Boston. They cannot access the data directly; even if they were the ones ordering the lab work. Instead, I have to first request that the data be sent to them – and then they have to make a request via fax.
Is that something, through the new opt-out health information exchange, with my permission, that my data would become accessible to them?
SARKAR: We have not explored in detail going across state lines yet. It is definitely on our radar.

But within Rhode Island, [while it may not be particularly useful in your particular instance], but let’s say, for something where you are going to South County Hospital, and you are using a different EHR system, they would access to your data by default, without you having to do anything.

There is definitely a national discussion over how we can make data available across networks, and that is definitely something that will happen in the future.

I do not have a specific timeline for that, but definitely it will be within the next area of focus for us, once we have shifted to opt-out, making the data more compatible with some of the other exchanges in the nation.

ConvergenceRI: Do you feel as if extra weight has been put on your shoulders?
SARKAR: It is a little stressful, for sure. But it is one of those [situations] where because it is so exciting, the challenge for us to make sure that we have really involved the community in a way that everyone understands the benefits of CurrentCare, and why they should remain in CurrentCare and not choose to opt out.

It is an opportunity for us, as an organization, as a state, as a health care system, to reintroduce CurrentCare and the Rhode Island Quality Institute to the community and promote the benefits.

ConvergenceRI: What agencies often do in this kind of situation is to say: we need to hire a consultant right away to advise us on communications, on how best to manage the messaging. I know, with the initial introduction of CurrentCare, there were communications consultants hired. Is that something you recognize that you need to do?
SARKAR: It is still early for us, and we are looking at what we need to accomplish and on what timeline. And, also, what funding is available to support anything we wanted to do. That will help inform what type of consultants, if any, we engage in this process.

And, there is a range of consultants. There are PR consultants; there are also consultants to help us on the technical side of things. It is about finding the balance between what we need to accomplish in the short term versus those things that we need to make sure we have built in-house expertise around.

What we do not want to have is consultants that come in, do something for us, and then we are stuck figuring out how to do things going forward, because that would directly weaken our sustainability.

ConvergenceRI: So, you are going to be focused on building your own in-house expertise, if I heard that correctly?
SARKAR: Yes, and augmenting it with consultants, will be a potential that will be explored, at least in the short term.

ConvergenceRI: In terms of potential merger of Lifespan, Care New England, and Brown, they will have their own issues to resolve around interoperability around their own EHR systems.
For instance, someone I know went to a primary care provider, which was Coastal, a division of Lifespan, but was then treated at the emergency room at Kent Hospital, which is a division of Care New England. None of the tests conducted on the patient by the primary care provider were transferable, so that the emergency room had to redo all of the tests.
Given that the patient’s condition was urgent and resulted in emergency surgery, it seemed to create an unnecessary burden for the patient’s care. Is that the type of thing that the new configuration of opt-out CurrrentCare could get around?
SARKAR: That is exactly what CurrentCare was designed to address, which is the reduction in the need for repeat tests.

Of course, there is always clinical judgment when a test needs to be reordered. But, having said that, if a test has entered the realm [of the HIE] and the physician is able to gain access to the results, it means that a second test or a third test may not need to be ordered.

Definitely, that is one of the standard reasons why CurrentCare is so important from an economic perspective but also from a patient’s sanity perspective. Physicians are trying to be as efficient as they can be, and if the test results are not there, the fastest thing to do is to order another one.

ConverenceRI: Is it frustrating that a lot of this information about health data and the value of health information exchanges appears to fly under the radar screen in terms of news coverage?
SARKAR: I think that some of this is on us, making sure we are providing messaging in a way that is understandable. You are someone I know that I can always reach out to -- and you are [well-versed] in this area.

This is not meant to be disparaging to any others in the media. But, if the community doesn’t understand it, it is our fault, rather than the community’s or the news media’s fault.

We are working on that. That has to become part of our re-branding campaign: How do we make sure that we are more relatable as an organization? How does CurrentCare truly become a household name? And, [how do we become recognized] as something that the community values for their own health care?

At the end of the day, the person who cares the most about one’s care is [herself or himself], or a direct care giver.

ConvergenceRI: That is a good answer. I was also hoping for a compliment to come my way for all the great health coverage I provide.
SARKAR: [laughing] That goes unsaid, Richard.

ConvergenceRI: With greater participation in CurrentCare through opt-out, will it increase the ability to perform complex data analyses and expand the kinds of research that can be done? Have you given any thought to the kinds of research that you would like to be undertaken as a result of this change?
SARKAR: Yes. It has been a major area of mine as a researcher to explore the longitudinal story in the patterns that we can draw [about health care]. Even with only half of the state’s population enrolled in CurrentCare, we are able to do a lot.

But I think having a more complete picture now provides us an opportunity to truly understand the health of Rhode Islanders. It is easy to say that, but there is a lot of underlying work that is required, and we have been working at cleaning data, and organizing it in a way so that it can support these kinds of research endeavors that ultimately do inform public health and also inform clinical practice.

We are heading in that direction. There is still a bit of work to do. The addition of the other half of the state through opt-out will help us to have a more complete picture.

ConvergenceRI: What haven’t I talked about, should I have talked about, that you would like to talk about?
SARKAR: This is an exciting time for us here in Rhode Island and in the nation, and I think that all of us are right now are focused on COVID-19 and what it is doing to our communities.

[In this interview], we have spoken mostly not about COVID-19; I appreciate that. But I think we need to be mindful of what are the things that we can make sure [we know] when the next pandemic or the next public health emergency occurs – and what we are able to do at the health information exchange that we were not able to do in this current pandemic.

I think it is important point [to make] that this is a really important advance for Rhode Island. It is another very positive direction [taken by] our state in showing that health care is not an elite industry in terms of who we serve, and it is another step for providing equity in health care access. CurrentCare should be seen as a right and not a privilege. I truly believe that we are doing more and more of the right thing here in Rhode Island, together as a community. We are becoming better.

ConvergenceRI: One of the phrases I heard repeatedly at the ONE Neighborhood Builders event on Monday, July 26, celebrating the completion of two affordable housing projects, was that “housing was health care.”
If that is true, how do we then incorporate things like housing into the data structure of health care? Or, given the increased air pollution from forest fires burning out west, how do we include environmental factors in the data around health care?
SARKAR: I think it is an excellent question, and I think that we increasingly are having these dialogues about health care and how do we make it better, looking outside the realm of traditional health care data.

There is definitely an increased mandate from the federal government in doing a better job of collecting data on social factors, or as everyone calls them, the social determinants of health. I do not particularly like that term, because it is deterministic. There are always a choice of factors, including social factors, [which] are influencing care and access to care.

I think more attention needs to be given to these factors, but I also caution us all not to get distracted by going into realms that are not necessarily health care, to make sure that we can identify what those bridges are, and working in partnerships with our colleagues in other sectors.

Without a doubt, housing, the quality of housing, and access to housing and transportation are perennial challenges to health care. We know that they impact health outcomes. There needs to be a better hand-off between health care and entities that support transportation and housing.

I think the Rhode Island Foundation has done a good job with their looking at education and health care in parallel. Housing again is a recurrent theme in both of those areas.

In my opinion, we have to be careful to stay in our lanes, but also in helping folks in other lanes identify areas that need to be prioritized, to help all of us in the community have eyes on what is going on.

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