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NY-Based HIE Captures One Million Patient Consents

Posted on September 28, 2017 I Written By

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

One of the big obstacles to the free exchange of health data is obtaining patient consent to share that data. It’s all well and good if we can bring exchange partners onto a single data sharing format, but if patients don’t consent to that exchange things get ugly. It’s critical that healthcare organizations solve this problem, because without patient consent HIEs are dead in the water.

Given these issues, I was intrigued to read a press release from HEALTHeLINK, an HIE serving Western New York, which announced that it had obtained one million patient consents to share their PHI. HEALTHeLINK connects nearly 4,600 physicians, along with hospitals, health plans and other healthcare providers. It’s part of a larger HIE, the Statewide Health Information Network of New York.

How did HEALTHeLINK obtain the consents? Apparently, there was no magic involved. The HIE made consent forms available at hospitals and doctors’ offices throughout its network, as well as making the forms available for download at (It may also have helped that they can be downloaded in any of 12 languages.)

I downloaded the consent form myself, and I must say it’s not complicated.

Patients only need to fill out a single page, which gives them the option to a) permit participating providers to access all of their electronic health information via the HIE, b) allow full access to the data except for specific participants, c) permit health data sharing only with specific participants, d) only offer access to their records in an emergency situation, and e) forbid HIE participants to access their health data even in the case of an emergency situation.

About 95% of those who consented chose option a, which seems a bit remarkable to me. Given the current level of data breaches in news, I would’ve predicted that more patients would opt out to some degree.

Nonetheless, the vast majority of patients gave treating providers the ability to view their lab reports, medication history, diagnostic images and several additional categories of health information.

I wish I could tell you what HEALTHeLINK has done to inspire trust, but I don’t know completely. I suspect, however, that provider buy-in played a significant role here. While none of this is mentioned in the HIE’s press release or even on its website, I’m betting that the HIE team did a good job of firing up physicians. After all, if you’re going to pick someone patients would trust, physicians would be your best choice.

On the other hand, it’s also possible patients are beginning to get the importance of having all of the data available during care. While much of health IT is too abstruse for the layman (or woman), the idea that doctors need to know your medical history is clearly beginning to resonate with your average patient.

Is the SHIN-NY “Public Utility” HIE Funding a Model for Other HIE?

Posted on April 25, 2014 I Written By

John Lynn is the Founder of the blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

I first started working with the New York eHealth Collaborative (NYeC) many years ago when they first organized the Digital Health Conference many years ago. Hopefully they’ll have me back again this year since I’ve really enjoyed our ongoing partnership. Plus, it’s a great way for me to get a deeper look into the New York Health IT landscape.

While NYeC organizes this conference, has an accelerator, and is (is this a was yet?) even a REC, the core of everything they do is around their HIE called the SHIN-NY. Unlike some states who don’t have any HIE or RHIO, New York has 10 regional health information exchanges (formerly and for some people still called RHIOs). The SHIN-NY is the platform which connects all of the state’s RHIOs into one connected health network. Plus, I know they’re working on some other more general initiatives that share and get data from organizations outside of New York as well.

While the SHIN-NY has been worked on and sending data for a number of years, the news just came out that Governor Cuomo included $55 million in state funding for the SHIN-NY HIE. This is a unique funding model and it makes me wonder how many other states will follow their lead. Plus, you have to juxtapose this funding with my own state of Nevada’s decision to stop funding the state HIE that was supported with a lot of federal government funds as well.

In my HIE experience, I’ve found that every state is unique in how they fund and grow their HIE. Much of it often has to do with the cultural norms of the state. For example, New York is use to high state taxes that support a number of government programs. Nevada on the other hand is use to no state tax and government funding largely coming from the hospital and gaming sectors. Plus, this doesn’t even take into account the local healthcare bureaucracies and idiosyncrasies that exist.

What do you think of this type of HIE funding model? Do you wish your state would do something similar? Will we see other states follow New York’s example?

I’m excited to see how NY, NYeC and the SHIN-NY do with this HIE funding. Knowing many of the leaders in that organization, I think they’re going to be a great success and have a real impact for good on healthcare in NY.