Much has been said about the formularies, cost-sharing, and patient burden required of enrollees on the ACA health insurance exchanges. Deductibles averaged nearly $3,000 for silver plans on the exchanges, and cost-sharing for specialty drugs can often reach 40 percent or higher. None of this is new, and this is a trend going on outside of the exchanges, in the employer-sponsored market as well. According to the Kaiser Family Foundation, employer plans now have deductibles averaging over $1,000 and a small, but growing share of plans use coinsurance rather than copays even for physician visits. Fundamentally, this means that patients are more involved in their health care decision-making.
As I've written in the past, this isn't necessarily a bad thing so long as patients have access to appropriate information. Patients taking more control over their health care dollars is a requisite for controlling health care costs. But focusing only on costs is a bit myopic. Certainly, all patient decisions will have an effect on spending. Yet cost concerns are far from the only reason to want patients to have access to all appropriate information. Indeed, health care isn't about cutting costs – it's about improving patient outcomes, even at the risk of spending more money.
So what kind of information are we talking about?
The need for good formularies, physician networks, etc. (primarily, information that you expect from your insurer) is incontrovertible – but this point has been made. And importantly, without other improvements in information availability, the effect of better insurer information on cost and outcomes is likely to be limited.
This boils down to “personalized” genetic and phenotypic information, along with . This could be a person's risk for any number of diseases or conditions. It might be alternative (or even preventative) treatment options for diseases given a person's behaviors or family history (watchful waiting for some types of cancer might be more appropriate if there isn't a family history of cancer – or less appropriate if the person has a history of heavy smoking). Fortunately, we're starting to get there, thanks to efforts on the part of both government and private industry.
Government involvement in helping uncover and collect this information is unavoidable. For starters, the large upfront cost creates a need for a big player to take part – and there are few players bigger than Medicare. On top of that, the business model of doing these deep dives can be a bit murky – the social benefit of developing large, comprehensive databases of this personalized information (and making the information actionable for individual patients) trumps the private benefit. That being said, given the government's poor history of IT security, a single large repository may not be ideal. Instead, government can coordinate and even help underwrite costs – the real fixed cost that may disincentivize investment.
The Obama administration's “Precision Medicine Initiative” should come as no surprise then (indeed, it should be seen as a brilliant move). Bringing together genetic data for over a million Americans (most of it from existing public and private databases –a coordination effort) and making it available to researchers (and hopefully, to patients as well eventually, in an easy-to-understand format) will do much to help understand the intricate links between diseases and how we can treat (and prevent) them at the genetic level.
The next important step, however, is channeling this information into patient decision-making. This is where the private sector should excel, since patients' decisions (informed by clinicians, of course) can feed directly into a profitable business that delivers tremendous benefits to its customers.
23andMe for instance (up until the FDA clamped down on it), offered direct-to-consumer genetic screenings that offered risk profiles for a variety of diseases. While there are concerns about over-screening and perhaps even over-treating, it is important to remember that any treatment decisions would likely be made along with a physician – it's unlikely that a surgeon would perform a double mastectomy just based on a direct-to-consumer test for instance.
But beyond the “disease awareness” information that 23andMe was providing direct-to-consumer, there is another category of “personalized information” that deals with treatments that are already underway. Here, physicians and pharmaceutical companies play a critical role.
A recent survey from Accenture found that when patients are made aware of patient services being offered by pharmaceutical companies (this can include simply receiving more information about the condition, and how to better manage it – ostensibly, this could include information on screenings and the like), nearly 60 percent make use of them. Unsurprisingly, patients predominantly received information through health care professionals. And even though pharmaceutical communication with physicians has come under scrutiny recently, communicating disease management and risk information shouldn't raise many red flags.
Perhaps one of the most important lessons from Accenture's survey, is one that applies much more universally to all kinds of health care information. When asked about the channels used to obtain information, 57 percent of patients said that they used digital channels. This means moving away from paper-based test results, phone calls etc. and instead integrating as much as possible into an EHR with an easy-to-access patient portal.
Yes, we need good formularies, physician networks, and cost calculators. But beyond that, there is a whole other fountain of information that patients will need. Gathering, vetting, and distributing it will be an even bigger challenge, but one with potentially massive payoffs for patients (and the companies doing the distribution).
This piece originally appeared in Forbes.com