CMS actuaries predict a $6 Trillion / 19.4% of GDP healthcare sector by 2027. I have yet to find a single person who thinks that is sustainable for the US economy and political system. A revolution will come. It could be ultra-left or ultra-right in how it introduces price cuts, but it will happen long before anyone figures out how to “bend the cost curve” by fiddling with regulatory capture.

The current administration has only a few months to steer the revolution in a market-driven direction that actually enables price and quality competition. Patient-directed interoperability and data use transparency could be in place by 2021 without any obvious need for congressional action beyond existing 21C Cures.

The roadmap is described in my recent post https://thehealthcareblog.com/blog/2019/02/22/oncs-proposed-rule-is-a-breakthrough-in-patient-empowerment/ I’m an optimist and betting HHS will do it. Join me.

David, Thanks for your comment. Agree — legislation in 2019 is not a done deal. Keeping my fingers crossed. We’ll continue to write about this.

Good Question !
Youll Definitely get an answer on my Blog too in some days !
https://momsbosom.com/

Steve

Federal legislation for data/privacy protection would be a good start…but it’s not the final answer.

And yes, Zuckerberg has lost all credibility and trust. As a start, FB needs an “under new management” sign.

Lygeia, thanks for your positive words!

Lymepolicywonk, agree that de-identification comes with risks of harm….and re-identification is especially doable with health data given the specificity and uniqueness of data.

I’m impressed with the registry you’ve established. More generally, I think that you illustrate the need for independent 3rd parties to oversee health research projects.

William, you raise good points. Part of the complexity of potential legislation is that there are so many diverse interests and not easily foreseeable circumstances.

And, while other types of data about us have been gathered for decades, health care data harvesting is still a relatively new field — most health record data hasn’t been digitized until recently and much of it still isn’t…and we’ve got a long way toward getting past silos of non-interoperable data. As you note security is critical. Risks and opportunities.

Additions:

1. Patients need to have enough equity ownership in their medical records such that they can get together as a class and, perhaps with their attorneys, investigate the data, write papers, present facts to Congress or state legislatures and, in fact, ultimately change behavior of their health plans or insurers or hospitals. They, therefore, need to be able to study the data and do things with it. Symmetry. Now we have huge firms and agencies using and profiting from the data. The patients need to be able to do the same thing.

An example: Say there is a health plan Thrive. Thrive owns some nursing homes and some outpatient laboratories and image centers. There are similar outside competing facilities in the same service area. Patients get wind that referrals from Thrive are always to its own facilities where prices are notoriously high. A study is needed.

Or say the community finds thru anecdotal reports in the newspapers that the ER of its dominant hospital is not following EMTALA principles and is demanding payment guarantees prior to service. A study is needed.

2. The definition of data should extend to financial data associated with the patient’s clinical data. This is what is demanded of the patients and should be what the patients are demanding from the insurer or provider. Again, symmetry. And again, the notion of ownership of the data needs to be studied.

3. We need to have accountability processes so that if failure of data security occurs, some consequencies happen.

4. We need to be able to test security by using contracting hacking services.

Also nice to reconnect with Deven who taught me so much when I chaired the patient privacy panel at PCORI.