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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.

Pilot Tests Use of Tablets To Get Medical Record-Sharing Consent

Posted on March 22, 2012 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.

A Western New York based program has begun testing whether patients can “meaningfully consent” to exchange of their medical data after going over a tablet-based application.

The pilot, which begins in September, will measure whether patients truly understand how their information will be shared. It’s being tested at a hospital and three clinics which already participate in the HEALTHeLINK HIE.  If the project, (which uses technology from APP Design) turns out well, the app will be made available as open-source software.

How does it work?  Well, in essence, patients are handed a tablet in the waiting room, work through an app allowing them to consent to as little or much sharing as they wish through the HIE, and along the way, learn enough to find out whether they’re well advised to do such sharing.

Patients will have the chance to do everything from share everything all the time, forbid all data exchanges, prevent certain organizations from seeing the data and allowing exchange only in emergencies.

By the way, the pilot tickles ONCHIT, which likes the idea of patients getting a better grip on what they’re consenting to when they agree to data exchange between providers.

I think it will take many more form factors and approaches before we’ve got this concept just right, but I’m with the ONC that this is a good issue to take on.  After all, if we’re honest, many of us would have to admit that we’re just waiting for the first lawsuit in which a patient is upset cause data went to that doc in addition to this hospital.

Regardless, it’s more than time that someone take on this issue. The issue of multi-layered patient data sharing over HIEs is a ticking time bomb otherwise.

Another Example Why Small EHR Companies Face Tough Challenges

Posted on May 27, 2009 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.

No doubt many small EHR companies have been looking at themselves in the mirror long and hard and asking themselves how they’re going to survive this rough market. Not only did the HITECH act slow purchasing of EHR systems, but between “certified EHR” and “meaningful use” many are questioning where the small EHR vendor will fit into the EHR market.

I could (and probably will at some point) expound on each of the topics above, but I think that EHR vendors have an even more difficult challenge on their hands. The challenge comes in the form of incredibly large number of marketing dollars and splashy partnerships.

Here’s just one simple example of what I’m talking about. It was just announced that HEALTHeLINK, The Western New York Clinical Information Exchange, now has formal agreements in place with Allscripts, eClinicalWorks, McKesson, MedAppz, NextGen Healthcare Information Systems and Pulse Systems. [Hailing out of Buffalo, I’d love to meet up with the people at HEALTHeLINK sometime when I’m visiting family in the area.]

I’m not sure how much of an impact this particular partnership will have on EHR adoption in upstate New York. However, that’s not really my point. My point is that this is just one small example of a partnership that the “big boy” EHR companies are going to use to market their product. Consider that the marketing budget for these large EHR companies is quite possibly larger than some smaller EHR companies entire budgets. That’s pretty formidable.

I’m not saying that small EHR companies should close their doors and stop competing. In fact, I hope just the opposite happens. I’m all for innovation and the most innovative products usually come from small companies who have to be innovative to survive. I’m just saying that these small EHR companies better come ready to fight. It’s not going to be a pretty couple months in the EHR industry. Only the strong will survive.

Of course, all is not lost for small EHR vendors that survive. Assuming EHR implementation failure rates continue at their current dismal rates, then there will be a tremendous opportunity for a number of companies to take care of those who fail to implement unusable EHR systems.