Coming Soon: Your healthcare data…So what?

Disclaimer: If you are already well-versed in the 21st Century Cures Act and the Interoperability and Patient Access requirements, you might find this boring. If the previous sentence left you scratching your head, this post is for you.

There is a good chance that either you or a family member has gone through the frustrating process of trying to get a copy of your medical records.

Rarely would any reasonable person wake up and think, “Hey, maybe I’ll skip doom-scrolling through social media to take a look at all my medical records today.” Most people avoid thinking about their health until a significant life event occurs: a family member is diagnosed with a rare disease that requires seeing multiple specialists, trying to qualify for a clinical trial for a novel treatment or even just applying for life insurance.

When dealing with an extremely stressful life event like those mentioned above, the last thing you or anyone in that situation wants to deal with is the frustrating process of getting access to that information. What would seem to be a simple request often takes weeks of many phone calls, money and sometimes even (wait for it…) a fax machine.

The good news is that this process should become much easier in the coming months with new regulations from ONC and CMS that aim to make it easier for people to access their healthcare data from their providers and health insurance plans.

Getting your medical record data from your doctor

ONC’s Cures Act Final Rule’s information blocking provision is trying to make the process of getting your medical records from your physicians much smoother by prohibiting what they call “information blocking,” which they define as any “practice that is likely to interfere with access, exchange, or use of electronic health information (EHI).”

ONC’s information blocking enforcement is scheduled to begin in less than two weeks on April 5th and will apply to providers, health IT developers (e.g., electronic health records or “EHRs”) and health information exchanges (HIEs), all referred to as “actors”. Physicians are largely depending on their EHR vendors to provide their patients access through their patient portals or other third party apps.

For patients who want quicker access to their medical records and are tired of phones and fax machines, this is a big win.

What does this mean for Providers?

To avoid any penalties tied to public reporting of blocking information, providers along with their EHR and HIE technology vendors, must make medical record data easily available to you starting on April 5th. To my knowledge, the fines for information blocking against these actors still have not yet been specified by CMS’ Office of the Inspector General (OIG), but there have been reports that they could be “as high as $1 million per infraction”.

How much could it really be? Banner Health recently paid $200,000 to settle two cases in which giving patients copies of their records took five months. Though these fines were not enforced through ONC’s Cures Act, the dollar amount of these settlements could directionally serve as an indicator that the fines to providers and other “actors” could be significant.

One challenge is that many physicians are dependent upon their EHR vendors to make the data accessible through their patient portals and many of the EHR vendors have been scant on the details for how they are going to enable this functionality for physicians and their patients.

Assuming those details are ironed out quickly, providers also stand to benefit. Specialists should have an easier path to seeing referred patients’ complete health history. When dealing with complex conditions, being able to see the longitudinal record of that patient gives the physician more pieces to the puzzle they are trying to solve. In parallel, the recently announced CMS Interoperability and Prior Authorization should further streamline the referral process for patients needing to see a specialist.

Could this tip the scales towards physicians finally retiring their fax machines in the near future? One can dream…

Getting data from your health insurance plan

CMS’s Interoperability and Patient Access final rule and its corresponding MyHealthEData initiative are directed at making data from health plans regulated by CMS (i.e., Medicare Advantage, Medicaid, CHIP and Qualified Health Plans on the federal exchanges) available digitally for members (or “patients”) to access via the applications (“apps”) of their choice that can connect to the health plan via Fast Healthcare Interoperability Resources (FHIR) APIs.

Why would you want to see information from your health plan?

Health plans’ claims data contain vast information about each member’s diagnoses, labs, procedures, and medications, all of which can provide great insight to providers caring for that member. For example, if your father were participating in a diabetes management program offered as a benefit by their employer, they could opt to connect and share the medication and doctor visit history contained in their claims data with their diabetes coach, who would then be able to make better recommendations tailored specifically to your father’s needs and goals.

These new regulations from ONC and CMS will have a large ripple effect across many stakeholders. There are likely to be some growing pains felt by providers and health plans in the near term to help us realize a better future where we can more freely access and direct where our health information flows.

What does this mean for the health plans?

Health plans regulated by CMS are diligently working to stand up their FHIR APIs for Patient Access by the July 1st deadline. Opening access to their robust data sets (e.g., medications, labs, visit history, etc.) will enable innovation for technology companies that support patients and aim to improve care coordination.

Many health plans make significant investments in analytics to better understand risk amongst their membership. One would hope that the increased flow of data from both providers and other payers will also help health plans better identify and offer assistance to their higher risk members, which would ultimately reduce costs for both the health plan and the member.

There has always been a question around members’ willingness to share their data with their health plan. There is a common (mis)perception that the health plan could raise your premiums if they find out you have a certain condition or take a higher cost medication. Rock Health recently reported that 53% of people surveyed were actually willing to share their data with their health plan, which is promising news. Transparency about how members’ data will (and will not) be used by the health plan will be paramount.

A question that often bubbles up is whether the health plans should play a role in deciding which apps are (or are not) safe for members to share their data with. Looking at parallels in the fintech industry, consumers carry the responsibility for deciding where their data goes, allowing apps like Mint or Personal Capital to access their bank or investment account information. It is likely the healthcare consumer (member, patient, etc.) will carry the same responsibility for making decisions about the applications with which they want to share their healthcare data.

How else could my healthcare data be used?

There are no shortage of ideas about how our medical records and data could be used to drive a more efficient and effective healthcare system. Several interesting use cases where electronic health information (EHI) is being used have already emerged and should continue to see much growth in adoption as a result of the new legislation and consumers having easier access to their health data.

Clinical Research: Contract Research Organizations (CROs) and pharma companies often pay $30k-$50k for each patient that is recruited and enrolled into their clinical trials (yes, you read that correctly). Investigators in the trials spend a lot of time and money to weed out patients in the recruitment funnel who don’t meet the inclusion criteria. Currently, investigators go through the manual process of getting prospective patient enrollees to sign a release form to retrieve their medical records, which can take weeks or even months to receive, often leading to patient attrition.

Allowing potential enrollees to share their medical record data electronically would reduce much of this waste, greatly speeding up the eligibility verification process for investigators and allowing them to make higher quality referrals. Hopefully, this could also lead to lower cost therapies. It never hurts to dream.

Life Insurance: There is an entire industry of Release of Information (ROI) businesses whose sole focus is to call medical practices and hospitals to get paper and faxed copies of medical records for people applying for life or disability insurance. This process can take weeks or even months, often costing the life insurance company well over $50 for each applicant. By allowing applicants to share their medical records digitally, life insurance companies can reduce what they refer to as their “turnaround time” to underwrite policies faster in addition to lowering their costs. Consumers get faster quotes on their policies and a better all around experience.

New Companies We Haven’t Even Thought of Yet: The finance and fintech industries are typically a few steps ahead of the healthcare industry in the adoption of technology, making it a helpful place to look for trends that could transfer to healthcare. Plaid developed a network with connections to banks and financial institutions that power popular fintech apps like Venmo, Robinhood, Coinbase and Betterment. The opening of access to patients’ medical record and payer claims data opens the door for a “Plaid of healthcare” to build a national healthcare data network connecting consumers, providers and payers, thus becoming a platform for all sorts of new, innovative companies.

You can also imagine applications that gave patients the opportunity to monetize their own healthcare data by searching for clinical trials and reviewing bids from CROs and pharma companies. With the growing trend of high deductible health plans, perhaps a company will bubble up at the intersection of healthcare and financial data, to help make each of us better “consumers’’ of our healthcare, not just sick care. There are many possibilities for innovation that could spur several large consumer-oriented healthcare companies.

Who are the winners in all of this?

Despite some of the looming questions (e.g., how EHRs will support physicians? How do we vet applications?), we, as patients, are the ultimate winners. With some baseline comfort using applications on your smartphone or the web, we should now have a much easier path to getting on-demand access to our health information from your physician or health plan without having to pick up the phone, set up an eFax account or wait on the mail. We will become the conductors and carriers of our own health information, making it flow more freely to anyone (or any application) helping us manage our health…without having to use a fax machine.