Understanding Your Data Privacy

Whether scrolling through the latest Twitter trends or clearing out your inbox, if you’ve browsed the internet within this past week, the chances are that you have received an influx of emails regarding privacy policy updates from some of your most-frequented websites. You may be wondering: what do all of these updates mean, and should I be worried?

At The New York Eye Cancer Center, we value transparency to the highest degree and will always keep patients up-to-date with all aspects of our work. With our new Results Page as an example, much of that work involves making scientific information clear and readily available to our patients. This is why we are answering all questions regarding the new data privacy regulations established by The EU General Data Protection Regulation and how your personal information is recorded into our website.

As of May 25, 2018 and after four years of preparation and debate across the EU, The EU General Data Protection Regulation (GDPR) has taken effect. According to the GDPR resource website:

“The EU General Data Protection Regulation replaces the Data Protection Direction 95/46/EC and was designed to harmonize data privacy laws across Europe, to protect and empower all EU citizens data privacy and to reshape the way organizations across the region approach data privacy … The GDPR not only applies to organizations located within the EU but it will also apply to organizations located outside of the EU if they offer goods or services to, or monitor the behavior of, EU data subjects.

The GDPR applies to ‘personal data’ meaning any information relating to an identifiable person who can be directly or indirectly identified in particular by reference to an identifier. This definition provides for a wide range of personal identifiers to constitute personal data, including name, identification number, location data or online identifier, reflecting changes in technology and the way organizations collect information about people.”

Your data privacy has been a paramount priority at The New York Eye Cancer Center throughout Dr. Finger’s 30+ year practice. In accordance with the latest guidelines set out by GDPR, please refer to the outline below on the types of information collected at this website, and what we do with this information:

Patient Contact Information:

Current and prospective patients to NYECC are able to request an appointment online. In order to schedule an appointment for you, we require a name, email address and phone number. This information is made securely and is used only by employees of NYECC as a means of scheduling your appointment. This information is not sold or rented to any third party.

Comments made to our website:

In order to comment on blog content on the website, we require a name and email address. The name, while published, is input by you, and can be initials or a pseudonym. The email address is not published and is used as a means of possible contact from NYECC should you permit it.

As with other websites, internet browsing may lead to the collection of automatic information, such as: internet IP, browser software, a recent record of browsing activity, and internet cookies.

Regarding the privacy of children, the NYECC website does not knowingly collect information from anyone under the age of 13 who is unaccompanied by a parent or guardian. The website’s content is not directed to children under the age of 13 unaccompanied by a parent or guardian.

To the greatest extent of the law, we reiterate that we do not disclose any personal information to any third party with your authorization.

Any concerns regarding your information can be answered by contacting us directly at 212-832-8170.

Since 1995, Dr. Finger has developed The New York Eye Cancer to be a world-class facility for the diagnosis and treatment of eye cancer. NYECC is a trailblazing practice, and continues to be so due to the trust, loyalty, and faith of our patients and supporters.


The NYECC Results Page: Introducing the Latest Eye Cancer Directory

In our previous blog, we unveiled Dr. Finger’s Results page, the first public database of its kind to report a doctor’s treatment outcomes. With the power of the world-wide-web at our fingertips, it is now easier than ever to browse for healthcare options. Search engines, with the simple press of a button, are able to provide patients with a virtually infinite list of specialists available to them locally, regionally, even internationally.

So, shouldn’t it be just as easy to know how successful these specialists are? How can patients choose the best doctor without knowing their past performance? These questions motivated the creation of Dr. Finger’s Results page, a launch that was met with glowing approval from across both patient and scientific communities. And now, this page is more comprehensive than ever!

Understanding the Report

Choroidal melanoma, iris-ciliary body melanoma, and squamous conjunctival malignancy are three of the most common conditions treated at The New York Eye Cancer Center. Once treated for these select diseases (whether through plaque radiation, chemotherapy, cryotherapy, and so on), patients are routinely seen at NYECC in follow-up visits, where they are monitored for any changes in tumor activity and quality of life.

Starting from December 1, 2017, each NYECC patient seen in these follow-up visits is anonymously entered in our Result’s page database — information that becomes immediately accessible on our website. These results are updated weekly, and with Dr. Finger’s practice spanning over 30 years, the database will continue to grow moving forward.

For each disease, we report on:

– Patients Entered: The number of patients included in these results, which grows with every week once patients are seen by Dr. Finger in follow-up.
– Visual Acuity: The average and median (most common) visual acuity, or eye chart test score, after finishing treatment.
 Local Tumor Destruction: The percentage of patients whose tumors are successfully eliminated through treatment.
– Initial Eye Removal: The percentage of patients who have undergone enucleation (eye removal) surgery prior to being treated by Dr. Finger at NYECC.
– Metastases: The percentage of patients whose tumors have spread to other organs after treatment.
– Average Follow Up: Number of years after treatment before additional treatments are required.

The data, located on our Results page and observable through an interactive table, reports on patients treated only by Dr. Finger. Patient data is strictly confidential, HIPPA-compliant and, once again, anonymous.

What’s New

Our Results page has a new look! Rather than having to observe all reports at once, we have implemented a ‘choose your results’ feature. This cancer directory allows you to choose which of these three diseases you would like to observe. Choroidal Melanoma, Iris Ciliary Body Melanoma, Squamous Conjunctival Malignancy — each of these reports now has its own page and table. These pages will be a source of information specialized to each disease; the result is a streamlined, organized process for eye cancer patients across the world. Here is a shortcut to the directory you can find on our page:


Choose your cancer below to view results:

 

Choroidal Melanoma »

 

Iris Ciliary Body Melanoma »

 

Squamous Conjunctival Malignancy »

 


The launch of our results page is the first step, and we encourage other centers to join us in this effort. The Eye Cancer Foundation will offer assistance to any center or solo practitioner in setting up a page akin to the new NYECC Results page.

Let’s hold ourselves accountable to our outcomes and empower patients to make their life-changing choice of eye cancer specialist based on visible results.


Ocular Melanoma Mystery: Rare Eye Cancer Found in 36 Auburn University Graduates

 

With 87,110 diagnoses estimated to be made in 2018 for U.S. Americans, skin cancer, particularly a melanoma, is the most frequently diagnosed cancer in the United States. Ocular melanomas, however, remain uncommonly diagnosed, affecting just six in every one million people a year. Given the extreme rarity of ocular melanomas, doctors and researchers were shocked to find this disease found in highly concentrated numbers in two states. A total of 36 people — all graduates from Auburn University, Alabama — were diagnosed with ocular melanoma. From Huntersville, North Carolina, 18 patients were also found out to have the same disease.

Left to right: Ashley McCrary, Allison Allred, Juleigh Green and Lori Lee

Juleigh Green, Allison Allred, and Ashley McCrary had spent their years at Auburn University as close friends. And later on in their lives, each woman discovered they had the same rare disease. Juleigh Green was the first among her friends to be diagnosed. Just 27 at the time, Green was experiencing strange flashes of light obstructing her vision and consulted her ophthalmologist immediately. In an interview with CBS, Green explains her shock upon what they found:

“[My doctor] said, ‘There’s a mass there, there’s something there, I don’t know what it is, but it looks like it could be, you know, a tumor,’” Green said. “It’s like you had the breath knocked out of you, you know?”

Allison Allred, who also was experiencing flashes of light for 7 to 10 days, was the second of their friend circle to be diagnosed in 2001, at the age of 31. Her doctor had first believed that the flashes were due to a retinal detachment. According to Allred, her doctor had said: “Well, [the retina] is detached because there’s a 10 millitmeter melanoma sitting on it.”

Both Green and Allred opted for enucleation and have had their afflicted eye removed. However, Allred’s extremely aggressive and stubborn cancer has since recurred nine times in six separate places in her body. “Two days ago I found out that it’s come back to my brain,” Allred told CBS, “So, I’m actually gonna have radiation on my brain tomorrow.”

Ashley McCracy was the third friend, with her own diagnosis coming from observing unusual black spots along her iris. In an interview with CBS News correspondent Anna Werner, McCrary said:

“What’s crazy is literally standing there, I was like, ‘Well, I know two people who’ve had this cancer.”

“And did you understand then how strange that was?” asked Werner.

“No. No, I didn’t.”

All three women were treated at Sidney Kimmel Cancer Center at Thomas Jefferson University in Philadelphia, Pennsylvania. McCrary mentioned Green and Allred’s similar diagnosis to her oncologist at Kimmel Center, Dr. Marlana Orloff.

Orloff was baffled.

“Most people don’t know anyone with this disease,” Orloff said. “We said, ‘OK, these girls were in this location, they were all definitively diagnosed with this very rare cancer — what’s going on?”

A fourth Auburn alumna, Lori Lee, is also being treated at Kimmel Center. “This is a rare cancer, so it’s not like you can just go anywhere and have anybody know anything really about it,” Lee said. “Until we get more research into this, then we’re not gonna get anywhere. We’ve got to have it so that we can start linking all of them together to try and find a cause, and then one day, hopefully, a cure.”

Orloff and her fellow researchers and oncologists at Kimmel Center immediately began to investigate this bizarre case. Thus far, the Alabama Department of Health states that “it would be premature to determine that a cancer cluster exists in the area”. Officials at Auburn University hope that research will help illuminate the cause of this rare cancer appearing at such high concentrations in Alabama and North Carolina.

Each patient’s emotional response to this mystery cannot be understated. “That was very hard for me,” McCrary told CBS. “Growing up, the one thing that I liked about myself was my eyes.”

Juleigh Green, pictured above, was the first of her two friends from Auburn University to be diagnosed with ocular melanoma.

McCrary’s personal journey in dealing with her cancer diagnosis lead to the creation of the Auburn University Ocular Melanoma Page on Facebook, which has astoundingly discovered 36 more graduates afflicted with ocular melanoma. The Facebook Page offers itself as an effective support network for these graduates.

Kimmel Center researchers continue to look for answers to explain these phenomena both in Alabama and North Carolina.

Stay tuned for the latest updates on this case and others by keeping eyecancer.com in your bookmarks.


Patient Stories

"Very well treated by Dr. Finger. He explained everything I needed to know about my issue with detail and attention, putting me at ease and giving me confidence to handle this problem for the rest of my life.”
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