, 44 tweets, 23 min read Read on Twitter
If I did a twitter thread series over the next few months detailing Alberta’s health information access request process & how empowered patients have legal rights ensuring their health information is used properly - would anyone be interested in following along?
#ableg #abhealth
Like, Did you know you can send AHS a Health Information Access Request & they are legally obligated to send you an audit of health workers who looked at your electronic health records?

Do you ever wonder if people who don’t provide you healthcare snoop through your file?
#ableg
Full disclosure, I worked at Alberta Health Services from Feb 2011 until May 2018. I worked as a Clerk III, a Unit Clerk, a Clerk V and a Patient Safety Analyst.

But of course, I was also a patient the entire time with my own electronic health records in multiple systems.
#ableg
I have done six “Request to Access Health Information” processes for my own electronic health information.

This is not the same as doing the FOIP process that many people are already aware of, this process is instead governed by Alberta’s ”Health Information Act”.
#ableg
You can learn more about Alberta’s “Health Information Act” at the following link: alberta.ca/health-informa…
You have rights under the HIA:
➖You have a right to access a copy of your health information held by a custodian, subject to specific & limited exemptions.
#ableg #abhealth
➖You have the right to request a correction or amendment of your health information held by a custodian.

➖The HIA protects your health information and governs the collection, use and disclosure of that information.
#ableg #abhealth
➖You have a right to know why your health information is being collected, used & disclosed.

➖You have the right to make an expressed wish regarding the disclosure of your (HI). A custodian is required to consider your concerns before disclosing your health information.
#ableg
➖You have a right to request an independent review of decisions made by a custodian regarding access to your information or a correction or amendment to your health information, within 60 days of being notified of the decision.

These are rights of patients in Alberta.
#ableg
If you are a patient who has used the Albertan health system, and you want to assert some of your rights (as listed above) one of your most powerful tools is the “Request to Access Health Information” form, which you can find here: alberta.ca/assets/documen…
#ableg #abhealth
From the site:
“A custodian may charge a fee of $25 for producing a copy of an individual’s health information. This fee includes the cost of photocopying/printing the first 20 pages of the record, preparing the document, removing information as necessary & reviewing the record.”
Also from the HIA site:
“Within 30 days of receiving your request, the custodian must provide you with access to the record, or notify you of the reason why the request has been refused.”

So within 30 days of sending the form, you get your info. It CAN be extended longer.
#ableg
When I went through this process as an individual six times over 6 years, I noticed some issues.

Primarily in 3 areas:
1) Records were inconsistently retrieved. I requested the same data multiple times but got different results. Doesn’t that defeat the point of an audit?
#ableg
2) I tried to speak with pros at AHS about concern #1 & another concern with my results, but they could not offer an explanation as to the inconsistent results I had been receiving. I could report to The Office of the Information and Privacy Commissioner (OIPC), but chose not to.
AND,

3) I barely got the data I wanted in this process & I knew a lot about the different health databases. Most patients don’t. A patient may ask for an audit of who looked at their NetCare & get it, but there are dozens of health systems they won’t even know to ask for.
#ableg
Over the years I learned what to ask for on the request form. Based on where I had been a patient, I knew I needed audits from at LEAST: NetCare, Clinibase, Millennium, EndoPro, a small database at a speciality clinic and SCM.

If you know of more, please share! @ShawnaGofABPoli
If you’ve been a home care patient ask for “PARIS”.

If you’ve been in the hospital, ask for “NetCare & SCM”.

If you’ve been an outpatient or at a clinic you probably need to ask for “Millennium & CliniBase”.

If you’ve been in GI you probably need to ask for “EndoPro”...
#ableg
If you want to see what has been charged to Alberta Health in your name, on the form ask for a:
“Statement of Benefits Paid”

You can see which medical professionals have charged Alberta Health saying they gave you a medical treatment or service of some kind.
#ableg #abhealth
As someone noted, don’t be surprised if you see names on your audit that you don’t know. It won’t just be your Doctors and Nurses, it’s your scheduler, your lab tech, your Unit Clerk too.
But DO be curious, you have the right to know why people are using your health info.
#ableg
For example, a researcher at the University of Calgary may have received permission to look at all the health information of a certain kind of patient, they got this permission from a research ethics board. Or you consented by signing a research form & forgot.
#ableg #abhealth
Those are legitimate reasons to look at a patient’s electronic health file.

But I think when most folks hear about this issue, they’re hearing about the small minority of uses that may be improper, stories like this one: edmonton.ctvnews.ca/mobile/we-feel…
#ableg #cdnhealth #abhealth
As Shannyn Rus said in the story:
“Obtain your audit logs, because you don’t know.”

Over the next few tweets in this thread, I will walk you through exactly how to do that if you want to.
#ableg #abhealth
If you are a patient who has used the Alberta health system & you want an audit log showing who has looked through your electronic health records. You will need a “Health Information Access Request” form like this.

You can find them here: alberta.ca/assets/documen…
#ableg #abhealth
In most cases you will be asking for your OWN information, so specify that on the form.
Sometimes requests are put in by people who are NOT the patient, but in those cases there is usually a legal authority like a power of attorney in place. Or you won’t get the info back.
#ableg
The form I’m using specifies they want an initial fee of $25 to process my request. Every time I’ve done this they waived the fee.

I am attaching a cheque for $25 today, because I have some on hand & I don’t want my request to be delayed for any reasons within my control.
#ableg
Once you have put in your name, birthday, Personal Health Number (PHN) etc: put in your mailing address. Put somewhere you actually collect mail. If you move - remember to update with your request’s coordinator because you will probably choose to be mailed the end results.
#ableg
Next you need to specify on the form what you want & as I outlined above (regarding dozens of different health databases existing in Alberta) you have to cast the right net, to catch the results you are looking for. Common databases include: NetCare, CliniBase, Millennium.
#ableg
You may need to ask for: Meditech, SCM, eScheduler, PARIS, EndoPro, Sunquest, Access DBs, Vax, EDIS, LabFusion, MediQuist, Nuance, MediPatient, EPIC, it goes on.
If you don’t know where to begin: NetCare is a good start & list locations of where you received services too.
#ableg
I am going to request what I was told is a “catch all”, but I’m not too sure how well it works. So I’ll put other stuff after. But to begin I am putting:

✍🏻Direct PIEM Operations to audit entire access information.

And the specified period I am looking for.
#abhealth #cdnhealth
Next, I’ll list individual databases I want, using this format:

✍🏻An audit log of all CliniBase, SCM...(etc) accesses to my electronic health record, by who, when, from which clinic, & for which purpose.

If you do this, your results will have columns for each of the categories.
A publicly available AHS document from April 2015 shows the following data is being stored when accesses are made to your health info in systems like NetCare.

So you can expect to get similar data to this back when you finish putting your request in.
#ableg #abhealth #cdnhealth
And for those concerned about the security of their health information for being improperly accessed, the same document shows the following security precautions.

So users searching patients with the same last name etc, may be detected in routine audits of the systems.
#ableg
I am going to request another “catch all” I was told, but I’m not too sure how well it works. I am being thorough for the point of this twitter thread:

✍🏻An audit of my health information from P2 Sentinel.

These are things AHS staff told me over the years.
#abhealth #cdnhealth
That’s all I am requesting.

Some folks were interested in my earlier tweet explaining you can get a list of what health professionals billed Alberta for health services in your name & for what reason.

For that I am going to have to fill out a second form to Alberta Health...
Some people may not realize, but Alberta Health and Alberta Health Services are two different things, thus the two separate forms.

Alberta Health is at the Government & controls most of Alberta’s health spending...one of the biggest recipients of that spending is AHS.
#abhealth
I am requesting audits of who looked at my health information from AHS.

I am requesting who billed in my name from Alberta Health.

If you make a request to the wrong one, they are pretty good at forwarding your request on & informing you that they have done so.
#ableg #abhealth
So on the new “Request to Access Health Information” form I am sending to Alberta Health (to see which clinicians billed what in my name), I fill the form out like I did the other one & then I am going to request this:

✍🏻A Statement of Benefits Paid.

Simple. 😃
#abhealth #ableg
Next I need to prove that I am who I say I am. So I am enclosing a photocopy of my drivers license and personal health care card with both of my request forms.

You can also fax instead of mailing, but ensure you fax one piece of photo ID or two pieces without a photo if you do.
With your form, cheque, and proof of identity ready.

Find a HIA location from AHS you can mail your request off to here: albertahealthservices.ca/findhealth/ser…

For Alberta Health send it to:
Alberta Health - FOIP
P.O Box 1360, Station Main
Edmonton, AB T5J 2N3
#ableg #abhealth
You can also fax or potentially email your request in too.

If you need help or have questions, there is a help desk.
Hours: 8:15 am to 4:30 pm (open Monday to Friday)
Phone: 780-427-8089
Toll free: 310-0000 before the phone number (in Alberta)
Email: hiahelpdesk@gov.ab.ca
#ableg
Just like that, two health information access requests in the mail:
1. To AHS for an audit of who has looked at my electronic health records.
2. To Alberta Health for a record of who billed Alberta in my name for health services.
They have 30 days to reply once received...
#ableg
Within the 30 days a few things can happen:
👉🏻They provide me with the information I requested.
👉🏻They refuse & notify me of the reasoning. I can appeal to the OIPC if I don’t agree with it, I must do this within 60 days.
👉🏻They can request & obtain an extension from OIPC.
#ableg
For all of you who are political nerds...like me, this is the legal obligation for Alberta Health Services and Alberta Health under the Act right now.

They are considered the “custodians” of the two separate requests I just sent to them in the mail.
#ableg #abhealth #cdnhealth
The custodian usually must respond within 30 days of receiving, but the “Health Information Act” also outlines the ways that this is not always the case...when extensions get granted.

I have had one request extended previously, for another 30 days.
#ableg #abhealth #cdnhealth
I will update either way in 30 days: if I am given access, or, if an extension occurs. I don’t anticipate being refused since what I requested is within my rights as outlined in the Act.

In the meantime however, I will continue to tweet other important HIA info.
#ableg #abhealth
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