If health is wealth…give me my data

Health Care Current | September 18, 2018

This weekly series explores breaking news and developments in the US health care industry, examines key issues facing life sciences and health care companies, and provides updates and insights on policy, regulatory, and legislative changes.

My Take

If health is wealth…give me my data

By Bill Copeland, vice chairman, US Life Sciences & Health Care industry leader, Deloitte LLP

Innovation could be the cure for what ails our health care system. By my definition, innovation breaks constraints to dramatically improve performance, which results in greater value for less cost and hassle. Interoperability generally isn’t touted as an important innovation, but it could have a significant impact on us all.

When we use the term interoperability in health care, we are often talking about the sharing of information among clinicians and health systems. But the real power of interoperability might be the democratization of a patient’s own health information. The power of interoperability could give people a chance to have all of their medical information in one place for the first time. This is different than just having access to an electronic medical record (EMR). While I can access my EMR now, I can’t pull information from it and share it with a doctor or anyone else. And the data included in my EMR is limited to what my physician and local health system gathered. It doesn’t reflect my complete health history.

As the health care delivery system evolves under the principles of value-based care, the insights and measures of performance are not just for the health care providers. These insights are for all the constituents in the health care ecosystem, particularly the patient and the patient’s primary caregiver. For consumers, having access to their own health data can have tremendous value.

Case in point: Last spring, the White House and the US Centers for Medicare and Medicaid Services (CMS) announced a joint effort aimed at improving patient outcomes by leveraging technology and increasing patient access to their own health data. The MyHealthEData initiative was created to help Medicare beneficiaries connect their health information to third-party apps and computer programs, and download their own claims data.

Interoperability could drive transformational change for patients

While there are many good reasons why this enabling technology is not maturing faster, I believe the real value creation will accrue more to the patients than to the health care delivery system. Over the past five years, as health care providers began to enter into value-based care arrangements, many of them have come to see the economic opportunity of quality care. But the value opportunities for patients could be much greater. This could lead to a transformational change for patients once they see the role they can play in achieving their health and wellness goals.

Having all health-related data (not just clinical information) in one easy-to-access place can give patients more control over their own health choices. The information could help them to make better treatment choices, share information with clinicians, and shop for services such as personalized medicine, wellness, genetic counseling, and community-support services. A patient, for example, could sign up for health alerts around a health-maintenance regimen that is tied to his or her own clinical data. The patient also could receive personalized health tips, dietary recommendations, medication reminders, or information on yoga classes.

To break the transparency constraints of our existing system, we should leverage technology to make data and information accessible to patients, physicians, and other health care providers, health plans, regulators, legislators, and the government. Interoperability can be defined as a rapidly emerging set of technologies that can be used by ecosystem partners to exchange data in real time. Interoperability has the potential to break existing constraints that restrict the sharing of data. It can make clinical data accessible regardless of where the data are hosted, the syntax used, or the format.

Survey finds consumers want access to their health data

Most clinicians and health systems can share information electronically with other health care providers and with patients. The sender and the receiver of the data typically operate on the same EMR system, and sometimes, the material being transmitted is a PDF document rather than a digital file. While this is progress, providers continue to own and control the data rather than transferring that ownership—and potential health and wealth value-creation opportunities—to the patient.

The Deloitte Center for Health Solutions recently completed its annual consumer survey. We asked consumers how interested they were in accessing, storing, or transmitting personal health information or record to a doctor or clinician.

  • Sixty-eight percent of all respondents said they were “very” or “somewhat interested” in using technology in this way, and 82 percent of millennials said they were interested.

When we asked consumers to think about their “ideal experience” with a doctor or hospital:

  • More than half—55 percent—of all respondents said it was “extremely” or “very important” to have unrestricted and real-time electronic access to their own personal health information.
  • Sixty-one percent of millennials said they felt this way.

While consumers are growing more interested in sharing their health data, physicians indicate that sharing EMR data with each other (and across the system) is their biggest challenge, according to our research. Ninety percent of surveyed physicians said they want something changed regarding their EMR systems, and 62 percent cite interoperability as the biggest pain point. Interestingly, hospitals and vendors typically don’t ask physicians for their feedback about EMR systems. Creating more physician engagement in EMR technology could alleviate some of the burden—and could bridge more connections to make it easier to share data with health care consumers.

My father’s generation is so used to a lack of information about their care that they often don’t expect it…even in the exam room. My father is planning a trip to his and my alma mater for a home football game, but traveling to South Bend, Indiana is a long trip for him. He recently bruised his knee cap and was worried he wouldn’t be able to make the trip. However, a recent visit to the doctor’s office—and two shots in his knee—gave him confidence. Before his trip, I asked my father for some details about what the doctor had injected into his knee. “I have no idea, maybe cortisone,” he told me.

I find it ironic that my father didn’t ask the doctor what was being injected into his knee. With six children in my family, he was a frequent visitor to the emergency room, and was ardent and active in our care. Maybe the system has worn him down over the years and he has learned not to expect too much.

From my perspective we should look at interoperability with the consumer in mind. Many consumers want to get their data no matter where it is, and they want to be able to use it to achieve their personal wellness goals for themselves, loved ones, and their parents.

PS: Please feel free to bookmark our physician and consumer survey collection page—we will be updating this page over the next few months with new content based on our surveys, including research coming out at the end of this month on consumer engagement.

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In the News

House Appropriations Committee increases funds for HHS, health initiatives

The House Committee on Appropriations filed a “minibus” funding bill on September 13. A joint House and Senate Conference Committee approved the package to fund initiatives and programs under the Departments of Defense (DoD), Health and Human Services (HHS), and other agencies. The package also includes a short-term Continuing Resolution (CR) to extend current funding for federal agencies until December 7, 2018.

The package contains provisions to fund research to cure diseases, programs to combat the opioid crisis, and education initiatives. Here are some of the key provisions for health care stakeholders:

  • HHS will receive $90.5 billion in funding, a $2.3 billion increase from last year.
  • The National Institutes of Health (NIH) will receive $39 billion (an increase of $2 billion). Some of this will be used to fund research for Alzheimer’s disease ($2.34 billion) and the Cancer Moonshot initiative ($400 million), among other efforts.
  • Programs designed to combat the opioid crisis will receive $6.7 billion, which includes $5.7 billion for the substance Abuse and Mental Health Services Administration (SAMHSA)—a $584 million increase from last year.
  • States will receive $1.5 billion for opioid-response programs. 
  • The Agency for Heathcare Research and Quality (AHRQ) will receive a $4 million funding increase.

The bill does not have bipartisan language that would have required drug manufacturers to disclose drug prices in advertisements. That provision passed unanimously in the Senate.

(Source: US House of Representative Committee on Appropriations, Conference Committee Approves Department of Defense, Labor Health and Human Services Appropriations Package, Continuing Resolution Introduced, September 13, 2018)

More states seek approval for Medicaid work requirements

On September 10, Michigan’s Medicaid program submitted a waiver application to add work requirements for able-bodied adults who receive coverage under the state’s expanded Medicaid program. If approved, Medicaid enrollees aged 19 to 62 will have to work, attend job-training, or volunteer at least 80 hours per month to retain coverage. The work requirement would go into effect in 2020. If CMS does not approve the waiver, the state intends to discontinue coverage for people who became eligible through the Medicaid-expansion provision of the Affordable Care Act (ACA).

About 655,000 Michigan residents are enrolled in Medicaid, and the work requirements could affect about 540,000 enrollees. However, given that the proposal includes 12 possible exemptions (e.g., family caretakers, full-time students, pregnant women), the number of enrollees who are affected is expected to be lower.

Michigan could become the fifth state approved for Medicaid work requirements—a growing list that also includes Arkansas, Indiana, and Kentucky. In June, a federal court blocked Kentucky’s work requirements (see the July 17, 2018 Health Care Current). Kentucky’s Medicaid program modified its waiver, which recently completed the public comment process with the intention to go live in 2019, following approval. Other states, including Utah and Wisconsin, have requests pending.

ACOs saved Medicare $1.84 billion from 2013 to 2015, report shows

The Medicare Shared Savings Program (MSSP) produced more than $1.84 billion in gross savings between 2013 and 2015, according to a recent report commissioned by the National Association of ACOs (NAACOS). The report challenges a previous finding from CMS that this group of Medicare ACOs underperformed during its first few years of implementation. CMS had estimated the ACOs generated a gross savings of $954 million, or about half the amount cited in the NAACOS report.

MSSP is the largest value-based payment model in the US and includes more than 10.5 million Medicare beneficiaries.

Findings from the NAACOS report might differ from CMS’s numbers due to the way ACO spending is calculated. According to some researchers, CMS’s estimates do not account for what provider spending would be in the absence of MSSP ACOs.

In August, CMS submitted a proposed rule that would reduce the time new ACOs can remain in the shared-savings-only model—from six years to two years (see the August 14, 2018 Health Care Current).

(Source: National Association of ACOs, Independent Study Shows Accountable Care Organizations (ACOs) Saved Medicare $1.84 Billion in 2013–2015, September 11, 2018).

Crowdsourced hospital ratings differ from CMS scores on safety, clinical quality

User ratings from three crowdsourcing sites tend to mirror CMS’s Hospital Compare scores for patient experience, but differ on topics such as safety and clinical quality, according to a study published last month in the journal Health Services Research.

Researchers contrasted 2016 Hospital Compare data with scores for almost 3,000 hospitals ranked on Facebook, another technology company, and an online consumer rating site for five key measures:

  • Overall hospital star rating
  • Overall patient experience
  • Unexpected 30-day readmission rates 
  • 30-day pneumonia mortality rates
  • Intestinal infection rates

According to the study, 50 to 60 percent of hospitals that ranked highest in the five measures on crowdsourcing sites also had the highest patient-experience scores on Hospital Compare. But between 30 and 37 percent of hospitals that had top measures for clinical quality scored lowest on Hospital Compare.

Factors such as patients’ concern about how they were treated, rather than clinical experience, could explain the difference in certain quality rankings, the study noted.

(Source: Health Services Research, Do Crowdsourced Hospital Ratings Coincide with Hospital Compare Measures of Clinical and Nonclinical Quality?, August 6, 2018).

Oklahoma limits sale of short-term insurance to six months

On September 7, the Oklahoma Department of Insurance (DOI) released guidance limiting the sale of short-term, limited-duration (STLD) health insurance plans to six months. This is in contrast to the administration’s recent final rule, which allows insurers to provide consumers with STLD plans for up to one year with possible renewals of up to 36 months (see the August 7, 2018 Health Care Current). States have regulatory authority to restrict STLD plans under federal disclosure requirements, and insurers that sell STLD plans must clearly state their exemption from providing certain ACA-mandated benefits.

(Source: Oklahoma Insurance Department, BULLETIN NO. LH 2018-03, September 7, 2018)

State Medicaid programs are adopting value-based care, health IT

State Medicaid programs are moving toward value-based care and are adopting more information technology while also responding to greater federal scrutiny, according to a survey of 45 Medicaid directors. The survey, which was published by the National Association of Medicaid Directors (NAMD), found that most Medicaid directors are focused on modernizing their programs as the rest of the health care system shifts toward paying for value rather than volume. Medicaid programs are also adopting technologies, such as data mining and predictive modeling, to improve their operations.

The survey also found that the average tenure for Medicaid directors is approximately 26 months—an increase over the 19-month average for 2016. Running a Medicaid program is a complex job that, according to the respondents, has become even more challenging in recent years. Congress and the administration have been enacting changes that affect funding and operations.

Nearly half of surveyed Medicaid directors indicated that behavioral health reform and curbing opioid abuse are among their top concerns. Strategies for combating opioid abuse include implementing prescription limits, increasing use of prescription-drug monitoring programs, mandating e-prescribing, and expanding treatment options through Section 1115 waiver programs.

(Source: National Association of Medicaid Directors, State Medicaid Operations Survey Report, 2018)

Breaking Boundaries

Advances in immunotherapy suggest progress in hard-to-treat cancers

Glioblastoma and medulloblastoma, two of the most common types of brain cancer, are aggressive—and often fatal within two years. Senator John McCain was diagnosed with glioblastoma in summer of 2017. After battling the illness for a year, McCain died in August, shortly after ceasing treatment. The cancer community, however, is hopeful that a combination of innovative therapies could give patients more time, and ultimately, a cure.

Immunotherapy works by engaging the body’s immune system to attack tumors, and this has been effective in treating some types of cancer. Aggressive brain cancers, however, are more challenging to treat with immunotherapy because of the blood-brain barrier. The brain has a layer of tightly packed cells to protect it from viruses and toxins that could be circulating in the bloodstream. However, this barrier can also keep cancer drugs from reaching brain tumors.

While immunotherapy has not worked in treating aggressive brain cancers thus far, a group of international researchers developed a molecule that can target—and might offer important next steps for treating—these cancers. To find ways around the blood-brain barrier, the research team studied mechanisms used by the neurological disease multiple sclerosis. Based on this research, the team developed a molecule that could infiltrate the brain after intravenous injections and target the tumors. The therapy does not appear to be toxic, often a problem with immunotherapy. The findings were published in the September 5 issue of Nature.

To date, the therapy has been tested in mice. Stakeholders agree early testing results have been positive but see challenges to overcome. Future studies will more closely examine the effects of the molecule on surrounding brain cells.

Most researchers agree that the future of treating glioblastoma and medulloblastoma will likely entail gene therapy, highly focused radiation therapy, immunotherapy, and chemotherapies together with vaccines.

(Source: Heba Samaha, Antonella Pignata, Nabil Ahmed, A homing system targets therapeutic T cells to brain cancer, Nature, September 5, 2018)

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