Mary Caffrey

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Last year, the Trump administration’s push for hospitals to publicly share 

 of their own healthcare information prompted lively debates about who “owns” the data, whether it should be shared and when.

Benefits of data sharing include improved care coordination, the ability to find outlying areas of waste to reduce costs, and the opportunity to improve quality and safety. These are necessarily balanced against the risks, which 

 that have happened with increased frequency, involving millions of patient records.

In the United States, armies of lobbyists and experts weighed in as the 2020 regulations were discussed. But in the year before the COVID-19 pandemic hit, researchers in the United Kingdom—where data debates are no less heated—tried a different approach to gain insights from ordinary citizens, whom they say are often not consulted in these discussions.

Calling their installation, the “Can of Worms,” the group from the Institute for Global Health Innovation created a public engagement installation at a London hospital that featured a series of cans that each contained an audio recording; each “story” would present the user with a data-sharing scenario in one of seven different areas: diagnosis, individual care, planning, policy, social services, treatment and prevention, and understanding disease. The researchers gathered demographic information and then asked the participants questions about the stories they had heard.

“Topics included international data sharing among patients with chronic diseases, genomic analysis, and data-powered predictive algorithms,” the authors wrote. “The fictional stories were developed by researchers based on anecdotal evidence of risks and benefits of data sharing to represent a balanced view.”

The authors, who report that 352 people took part in the qualitative study between November 2018 and June 2019, published their results 

Their title: Opening a "Can of Worms" to Explore the Public's Hopes and Fears About Health Care Data Sharing: Qualitative Study.

Participants have a mixed view of using health care data, which emerged in their responses. The researchers found six themes of hope, starting with the idea that having better access and ownership of their data would lead to more empowerment over their own care.

Participants also said they hoped for increased interoperability and collaboration, which they expressed as an interest in seeing the health system become less fragmented and more unified. Other “hopes” included the generation of evidence for better and safer care, improved timeliness and efficiency, the delivery of more personalized care, and greater equality of care. 

The participants also identified five fears, the greatest of which was inadequate security and exploitation—which did not surprise the researchers, because the May 2017 

 was still fresh on the minds of UK residents. Other fears were that data were inaccurate, that data could be used to discriminate against patients, and that widespread sharing of data would negatively affect the doctor-patient relationship.

While the study was small, the authors said it shed new light on public fears that widespread data use in healthcare could expand, rather than reduce, health disparities—and that it could make care 

 patient-centered. If health system designers are to rely on patient data to engineer solutions, they write, talking to those who are doing the data-sharing is essential.

“Incorporating the knowledge generated and focusing on co-designing solutions to tackle these concerns is critical to engage the public as active contributors and to fully leverage the potential of health care data use,” they wrote.

Articles

UK researchers have just published a novel study on the hopes and fears of ordinary citizens about how their healthcare data will be used.

Opening the Can of Worms: What the Public Says About Sharing Healthcare Data

MM+M Cites MJH Life Sciences’ Hennessy. 

This week, MJH Life Sciences™ President and CEO Michael J. Hennessy Jr. 

 by MM+M was one of the most influential leaders under the age of 40 in the pharma and healthcare marketing sectors. 

™ is one of the latest brands to join the MJH Life Sciences™ family under Hennessy’s leadership. Overall, MJH Life Sciences™ has grown to 60 brands, produces over 975 events and reaches 7.3 million unique visitors per month online and 2 million through print publications. Hennessy joined MJH Associates in 2010 as a national account manager and by September 2015 was elevated to president of the company. As president, Hennessy was responsible for identifying new business opportunities and driving the overall growth of the organization. In 2019, Michael was promoted to president and CEO of MJH Life Sciences™. During the COVID-19 pandemic, the company has increased the number of events and offerings by leveraging MJH Studios™ to pivot to virtual events. A month into the pandemic, the company launched Medical World News®, a channel for healthcare professionals.

Changing of the Guard at Huntsville Hospital Health System. 

One of Alabama’s most visible healthcare leaders will retire in July, when David Spillers, CEO of the Huntsville Hospital Health System, hands the reins to his successor, Jeff Samz, the current executive vice president and chief operating officer. The health system, which has 2,200 beds and 15,000 employees, made the 

 Tuesday. Spillers has been CEO since 2006 and has led the system through dramatic growth and change, with the biggest challenges coming in the last year due to the COVID-19 pandemic. Spillers’ profile rose as he took part in coronavirus briefings and publicly called for a statewide mask mandate three months before it was implemented. Spillers received praise from Philip Bentley, chair of the Health Care Authority, who said, “David’s leadership during the COVID-19 pandemic may be his greatest accomplishment. Few leaders could do what he has done as our hospitals have responded to the crisis.”

. Philadelphia area media outlets reported this week that the financially troubled Tower Health system, which owns six hospitals in the region, had replaced 

, takes the reins after the chief financial officer had already left, following an operating loss of $438 million for the year that ended June 30, 2020. The red ink continued to pile up, and a consulting firm and an investment bank have been engaged to weigh whether to sell five hospitals purchased in 2017, which have lost money since that time.

Welcome to Med Moves, a roundup of news about comings, goings, and happenings among healthcare leaders. 

MED MOVES: Michael J. Hennessy Jr. Named to 40 Under 40 List

Even before the pandemic, suicide had become a public health concern. According to 

, suicide was the 10thleading cause of death in the United States in 2018, with the 48,344 deaths more than doubling the number of homicides. Suicide is also the second-leading cause of death among those ages 10 to 34, and the fourth-leading cause among those 35 to 54.

Research shows that an attempt at suicide 

 of a completed suicide, even if patients 

 more dangerous methods. Amid the rising death toll, public health experts are investigating interventions that can begin with patients after they leave the emergency room. But less is known about the success of these interventions from the patient’s perspective.

 from authors at the Lausanne University Hospital in Switzerland shows why prevention can be so difficult—interviews with patients who had attempted suicide showed the same intervention yielded vastly different reactions. The latest results follow publication of the original study, which 

 of adding nurse practitioner check-in calls for a three-month period and a family intervention. Some patients refused the intervention, and others who accepted it refused the follow-up calls discussed in the most recent study, which authors said highlight the challenge of working with patients.

Respondents reported a range of reactions: Some thought the check-in calls from a nurse practitioner were very helpful, while others thought they came too often. Others were upset when the calls ceased. The authors wrote that some participants “deplored that too much attention was being paid to the suicide attempt, referring for instance to the fact that this act could be considered as a ‘personal choice.’”

“Multiple post-suicide attempt interventions have been studied but they followed almost always a ‘one size fits all’ approach, namely same intervention for everyone,” the authors wrote. “Our results seem to indicate, rather, that intervention needs are specific to individuals.”

Much of the paper features patients’ own voices, including this statement that sums up the authors’ call for personalized care after a suicide attempt: “It is a necessity but the call shouldn’t be too frequent; there should be an agreement with the person on how many times a week and at what schedule.”

Other patients blanched at the number of people involved in their care, especially if they were already being seen by a psychiatrist. Said one, “My doctor was already calling me and watching how I was doing, so it [the phone calls included in the intervention] kind of oppressed me actually.”

A second part of the original intervention, coming up with a joint crisis plan, brought mixed reviews. Many respondents said the timing of the planning process—while still in emergency care—occurred when patients admitted they were too aggressive for the process to be useful.

But the idea of establishing a relationship with a case manager, the person charged with developing the plan, had merit for some.

Patients who are being treated after a suicide attempt might be offered the chance to customize their aftercare, the authors said. Quality of encounters matter, and for some, a face-to-face follow-up may be preferable to phone calls.

“Our results seem therefore to speak for such a ‘one-on-one’ intervention,” they wrote. “Indeed, such an approach could take into account how patients understand their suicide attempt and how they plan to recover from it … by avoiding overcare when patients prefer to rely on other resources.”

A study interviewed patients in a study of a post-suicide intervention and received a range of answers on how it was received.

Interviews After Suicide Attempts Show There’s No “One Size Fits All” to Care

Coronavirus disease 2019 (COVID-19) has exposed weaknesses in the healthcare delivery system and the glaring inequities that result, a group of experts from the front lines of the pandemic said this week during Academy Health’s Datapalooza and National Health Policy Conference.

Academy Health President and CEO Lisa Simpson, M.B., B.Ch., MPH, led the discussion that featured John Brownstein, Ph.D., chief innovation officer at Boston Children’s Hospital; Shereef Elnahal, M.D., M.B.A., president and CEO at 

; Brian Caveney, M.D., J.D., M.P.H., executive vice president, president for diagnostics and chief medical officer for 

 and Kara Odom Walker, M.D., M.P.H., MSHS, senior vice president and chief population health officer, 

The mobilization that has occurred to rein in COVID-19, including the data systems developed to track the disease and develop a vaccine, must not be forgotten when the pandemic ends, but instead must be deployed to tackle the health and economic disparities that have led to higher infection rates and more loss of life among minorities, the group said.

It won’t be easy, because the inequities are so deeply rooted, Walker said.

“Many of us are just trying to figure out how we embrace this moment to undo some of the underfunding by government,” she said. “We can't undo 60 or 70 years of a lack of investment in Black and brown communities, just by elevating and talking about it. We actually need to put money into those efforts, that is going to take time.”

Caveney said the pandemic has pressed every part of the health system to its limits, including the global supply chains that provide consumables, equipment, reagents and primers, and, as many saw early on, personal protective equipment (PPE).

“The gloves, masks, everything else—all the different components for clinical and drug research” were in short supply, he said. Few appreciate the global of supply chains, or that during the first days of the pandemic, “Some very specific border closures—for both political and health reasons—massively disrupted the supply chain and the ability to move those goods around the world.”

Thus, healthcare delivery relied not only on good clinical care but also on dealing effectively with agencies such as Homeland Security or the the Transportation Security Administration. Caveney recalled one episode that derailed testing early on: “Most of you will remember that the first epicenter outside China was near Milan, Italy. Well, it just so happens that by far the most important nasal pharyngeal swab manufacturer in the world, Copan, is just a few miles east of Milan, which was just down.”

This created the massive shortage of nasal swabs when COVID-19 testing was just ramping up. Business and emergency plans that called for redundancy suddenly became more important than ever. “We made a decision very early on that we needed to make sure we had many different labs all across the planet, but particularly across America,” Caveney said. This becomes important not just in a pandemic, but in events such as the winter storms that have gripped Southern states, knocking out power.

“We're diverting so many clinical specimens, not just for COVID, but for all of the other 5000 tests we do to our other labs,” he said. The United States needs to be more nimble at these types of logistics, “for whatever the world throws at us next, including the next pandemic.”

Just as the pandemic exposes the need for change, it has also propelled long overdue changes in areas such as telemedicine. “We’ve had a telemedicine program and efforts in digital health for so many years,” Brownstein said. “But it took this moment to bring all these stakeholders together—clinicians, researchers, business leaders, and we’ve seen an unprecedented level of innovation both within our system, but also on a global level.”

Hospitals, which he said “are not known for their agility,” were able to mobilize in novel ways: Brownstein’s own hospital has built a 

 that was deployed to identify “pain points,” showing where to increase testing capacity and implement contact tracing. Use of telemedicine has soared.

In the process, he said, “We’ve built what we think is the foundation and institutional muscle” for additional data gathering and healthcare delivery, including the leveraging of social media streams. “This is the starting point.”

There were many disappointments and frustrations in the public health arena early on, and information was lacking, Walker said. But she agreed that the ability to pull together a data infrastructure that ultimately guided the healthcare response was a bright spot.

“Ripple Effects” of Inequity Revealed

Walker, who previously served Delaware’s secretary of Health and Services, said the intersection of politics and public health was “pretty shocking and surprising to me, in that we had no ability to bring those two worlds together in a coordinated way as a nation, and certainly at the state level.”

It’s shocking, she said, that U.S. deaths from COVID-19 account for 20% of all such deaths worldwide—a far higher share than its population—because politics overwhelmed common sense, public health guidance. Elnahal agreed, saying anti-vaccination activists have targeted the communities of color that make up 80% of the population near his safety net hospital. It’s taken diligent work to move the vaccination acceptance rate from 40% to 60%.

“I can’t tell you how many times I’ve repeated, ‘Wash your hands, stay away from people, stay home,’” Walker said, and yet economic inequities meant some people could not stay home, because their front lines required them to show up if they were going to pay the rent. “The ripple effects were intense,” and that led to nursing home deaths “the inability to protect our most vulnerable.”

Overall, health systems should have been better prepared. One area where society has been least prepared, she said, “is around the outpouring around anti-racism and around our need to focus on equity.”

The issue of health disparities has been raised in a glaring way, but Walker questions whether the country is ready to deal with this issue in an ongoing way.

Like Walker, Elnahal served in state government as New Jersey’s health commissioner, and taking on disparities was already part of his portfolio before the pandemic. But with COVID-19, “The cracks in health equity essentially became earthquakes in our community.” As a hospital leader just a few months into the job, Elnahal confronted challenges even the veterans he worked with had not faced.

There were nursing-patient ratios like none anyone had seen, pharmacists who worried about running out of sedating medications for the ICU, and, echoing Caveney’s comments, the constant worry about running out of personal protective equipment—while bidding against the cash-rich hospitals that populate the New Jersey suburbs.

“We couldn’t help but notice that every single person in our hospital that was filled with COVID patients was a person of color, and we have a much more diverse community that we serve at baseline,” Elnahal said. “That was heartbreaking.”

Working with allies in the faith-based community to build trust in both COVID-19 testing and vaccination, while promoting social distancing and contact tracing, “has never been more important.”

Elnahal and other panelists said that if the health system and the pharmaceutical infrastructure can mobilize to get people tested and vaccinated, and develop data systems to track the disease, there’s no reason they should not be able to use this model to take on the other plagues of minority communities.

“What about late stage breast cancer in black women? What about colon cancer and rectal cancer and prostate cancer and black men? What about chronic disease and our communities?” Elnahal asked. “Where’s the will and the effort to do that? We have to make a promise and fulfill that promise to community—that are we begging for their trust at this point on the vaccine, because it impacts all of us—and we have to deliver on that.”

Like Walker, he said that to change outcomes for the long haul, data on health inequities must be put front and center in front of policy makers and health system leaders, “and everyone in between.”

Experts from the front lines of COVID-19 discuss how lessons learned could help close health disparities. 

Mary Caffrey

Articles

Opening the Can of Worms: What the Public Says About Sharing Healthcare Data

MED MOVES: Michael J. Hennessy Jr. Named to 40 Under 40 List

Interviews After Suicide Attempts Show There’s No “One Size Fits All” to Care

Supply Chains, Data, Equity, and Trust: COVID-19 Reveals Healthcare Gaps