What Innovation Will Access to Health Data Create?
Accessing patient data has long been clouded with difficulties, concerning privacy and security. This has been problematic, as more often than not, this is exactly where those breakthrough cures sit.
The potential of gaining access to these records is huge, allowing to help establish which patients, with which backgrounds and disease characteristics, respond best to certain therapies.
Reassuringly, the federal Centers for Medicare and Medicaid Services is looking to open the data floodgates, writes Stat News. The agency wants to put patients in charge of their information instead of the hospitals and insurers that collect it and keep it locked within their own systems. More so, it wants to help app and device makers gain access to high-quality data.
“Patients should have access and control to share their data with whomever they want,” said Seema Verma, the CMS administrator. She went on to reveal a number of measures to improve data sharing and allow patients to open up their records to third-party executives with the ability to “develop cures that could save millions of lives.”
Over the years we have seen an explosion of technologies that have enhanced innovators’ ability to put personal health data to productive use. For instance, advances in machine learning and genomics can help predict a patient’s likelihood of getting a disease, as well as his or her odds of responding to specific treatments. Meanwhile, new apps are tracking patients’ symptoms, body functions, and physical activity, and in some cases even directly treat diseases.
Health technology specialists are excited about the initiatives unveiled by CMS, as they hope that they will dramatically increase the availability of patient records. They highlighted that Verma’s speech marked a significant shift in the government’s posture toward data sharing, after decades in which privacy concerns squashed most efforts to create a more fluid exchange of information.
“It’s the biggest step we’ve seen them take so far to say, ‘Look, the benefit of liberating data outweighs the privacy concerns,” commented Jonathan Porter, vice president of network services at Athenahealth, a maker of medical records systems. “There’s always been this battle between which is more valuable to the patient: to hold their data hostage, or to actually give it to people that need it?”
However, what Porter, nor Verma are suggesting is that privacy should be tossed aside in the name of scientific progress. Instead, they are suggesting that it is not necessary to make a choice between the two and that public policy should not be blind to the possibility of achieving both simultaneously.
In turn, many digital health companies and drug makers are demonstrating new ways of personalising treatments and making them easier to access. However, in order to further develop their products, they need more data on real patients and perhaps adjusting some of the long-standing privacy barriers to getting that information.
Therefore, the question posed is whether and when CMS’s efforts will produce results, and whether, in addition to companies, patients will also win.
It’s clear that CMS’s goal is to make health data as accessible and portable as a cell phone so that patients on public or private plans could easily access it when they’re shopping for medical services, or even talking with family members.
Yet the intent goes far beyond the reach cited by insurance executives.Verma has emphasised the broader commercial value of this data, by explaining that her agency wants to help create a “healthcare information ecosystem” that allows companies “to tailor products and services to compete for patients.”
An effort like this has the potential to follow in the footsteps of an already existing data-sharing program within Medicare. The Blue Button program started as a way for beneficiaries to download a record of what their physicians have billed to the agency. However, it’s future, Verma reinforced, is to build API’s – interfaces for computer programs to communicate – that could help deliver stepped up services to beneficiaries.
Don May, vice president for payment and policy at AdvaMed, a trade group that represents medical device makers, said improving access to clinical data – the type found in electronic health records – offers the most value to companies developing new products. “We really think that’s the best way to drive analysis of information because you’re getting clinical information about the totality of the patient’s care,” she added.
At present, CMS has already taken some steps in the right direction to increase the sharing of data in electronic health records. Starting next year, doctors in certain programs will be able to share more information via APIs, allowing patients to share their records with other providers as well as app developers.
One of the biggest challenges standing in the way of CMA and other stakeholders is in ensuring that data can be shared in a usable way. Countries around the world are making a significant step in the right direction, especially with Israel announcing its plans to launch a digital health database.
Meanwhile, European Union countries are rolling out a new privacy and data sharing law. Known as the General Data Protection Regulation, it ensures citizens can get a free copy of their health data in an electronic format and enables the sharing of that information with third parties. In addition, the law requires that patients be notified of data breaches within 72 hours of their discovery.