Patient Privacy

Overview

There’s this project named OPOR that is rolling out in Nova Scotia—One Patient, One Record. I’m not a fan of how the plan is to be implemented. Shortly, I have to do a research project for school, and given my love of self-hosted, free and open source technology, I wanted to do my project on rolling out a free and open source software that was already made decades ago; however, I would have suited it for my province instead of the province in which it was originally made.

Below are some of the points I disagre with regarding OPOR.

1. Offer a self-hosted solution to Nova Scotia physicians for patient files (e-Medical Record, or e-Health Record) based on the McMaster software Oscar or Open OSP. Both are free and open-source software found on Github.

2. Integrate billing for MSI, and out-of-office communication

3. Establishing a written guide for physicians so they adopt this platform

4. Find a way to import the files from Telus (currently the common patient file holder), and into the software

5. Feed patient data into Grafana by using Prometeus for clinic-wide trending of health

My aims are to:

1. Reduce the cost of owning a clinic by not paying for Telus

2. Clinics, or the VG, didn’t give Telus paper files, so I don’t see why digital patient information should ever leave the clinic.

3. Physician education in simple self-hosting and having the patient files available only through LAN.

4. Possibly consult with 45Drives in Sydney to gauge what type of hardware would be necessary for physicians to house in their clinics, and talk about back-up solutionsffer a self-hosted solution to Nova Scotia physicians for patient files (e-Medical Record, or e-Health Record) based on the McMaster software Oscar or Open OSP. Both are free and open-source software found on Github.

5. Integrate billing for MSI, and out-of-office communication

6. Establishing a written guide for physicians so they adopt this platform

7. Find a way to import the files from Telus (currently the common patient file holder**, and into the software

8. Feed patient data into Grafana by using Prometeus for clinic-wide trending of health

Email Responses from Professors or Mentors

[…] Furthermore, given that OPOR is coming soon the use of a non-compliant EMR system will not be feasible. As such, I will not be able to supervise such a project. If you have other, more interesting and feasible ideas, then reach out to me.

Based on your email, I am inclined to agree with Dr. [Redacted] that given the extensive efforts that are underway to move away from de-centralized systems in NS, the project may not be feasible. With that said, I have a very strong interest in privacy and health data and am open to hearing more about your research interests, and what exactly you have in mind re: OSCAR/ Open OSP.

I couldn’t find any reports or white papers on OPOR specifically, but these articles might be of interest to you and point you to some other relevant literature:

The Meeting

I had a meeting with the person who gave me quotes two and three above. Quote one is from “Dr. [Redacted]”.

Briefly, the meeting felt like a deradicalization attempt as I brought up the following points, found below, to the professor who used reduction and “just trust me” techniques. Albeit, the professor was honest in their approach, and that their significant other works in the Cyber Security discipline and voiced (often) the same complaints and concerns I voiced. Below are the points I made before we had our video-call meeting.

1. I think there’s no better data security than not having in/out connections to the Internet. A big steel door in the clinic is stronger than using IPtables. So, having a small form-factor server situated in a private clinic (e.g. family, dental, etc), would provide fantastic privacy, and protection, through a few methods:

1 A) Turning the server off once the day is finished (LUKS encryption);

1 B) impossible to door-knock, port-scan, or other pentest attacks;

1 C) All patients can retain copies of their files with a simple USB drive.

2. Having patient data in the clinicians’ hands makes for a convenient data set so that the data(base) could be read by Prometheus and then have Grafana pick up the data while transforming it in a visual way to summarize overall clinic health, by-demographic (e.g. age) health, etc.

3. Saving money. I know there are funding opportunities for physicians, and other health providers, to get the Telus EMR/EHR software operational in their workflow. However, having a single company hold patient data is unsettling. I use Proton Mail, who say that they don’t read emails because of encryption keys; however, they are able to access emails because they assign and own the encryption keys. I imagine the same is true for other data-holding companies like Telus, and whoever will be contracted to manage sensitive patient information.

4. LockBit 3.0 (a single example) is a multi-national, annonymous hacking group that regularly, and successfully, penetrates large companies to hold their files ransom. Alike to big companies like Lockheed-Martin, centralization of information makes for a big target; federation would be superior, in my opinion, though that distribution model is outside of my auto-didactic scope.

5. The government financial bill that was unwelcome Doctors Nova Scotia made a good point: the legislation is “quite broad and it’s not entirely clear the information they might be accessing.” So, this affects, like I mentioned in my primary email, that this will have negative effects on communities such as the local Cape Breton Indigenous communities (per my classmate who lives in Eskasoni) who already have a strong distaste for many government-related plans, and actions—this would be one of those unattractive decisions.

5 A) Another thought is who will read this information because when I was working as a paramedic, I saw clinicians scroll through patient data who they had no patient contact with because they were curious. How far can that example go if everyone has their entire patient history on one HTML page? I’m guessing one glace is too far.

6. The networking plan, with a gross oversimplication, would be having a main data server for patient files, a secondary throughput server that would act as a sending gateway for billing. For receiving information, the throughput server would quarantine the incoming data, and once there is a review of the files, then those files can be incorporated into patient files.

7. There are two big technological arms-races these days: quantum computing, and artificial intelligence. Recently, Google published a paper talking about their quantum computer capabilities which can, essentially, take a password that would conventially take millions of years to crack, and instead crack it in under one hour. The IEEE have noted that encryption such as those used in PGP, will be useless around 2029-2030. This feeds into data protection of the data-holding companies, such as Telus, and whoever is going to be handling the OPOR data. 7A) Quantum computing is unnerving enough, though, when those (logical) qbits begin powering AI, then there will be fast growth in its performance. One possibility, is that a bad actor could use that hardware, remotely, or in the Google lab, to cause damage, or privacy breaches.

8. Using Oscar or Open OSP would simply be putting in billing codes, and forms for primary care providers to use (dental, family, etc). I’d also like to work collaboratively with some people I’ve spoken to about this project already (and they strongly want this project to materalize). A few examples are MedIT, those working at a dental clinic that I’m shadowing at tomorrow for a second time, and also my classmates.

My goal is to graduate this MD program, and work in primary care, plus wherever else I’m needed: ER, in-patient, etc. Personally, if I cannot protect my patients with offline-first technology, then I’ll seek to refuse using the OPOR program, and learn to use paper. I see the benefits of OPOR, but I care more about patient privacy than convenience. Even one risk isn’t worth a great deal of reward.

What’s the definition?

Towards the end of the meeting, I was asked about my personal definition of privacy. Because privacy is a penetrating factor of life, it cannot be contained in a short sentence. Instead, to align the reader to what my mind sees regarding privacy, I thought it’d be best if I use narrative. Unfortunately, I couldn’t provide the response quickly in the meeting, so I gave a short understanding which is found in the below paragraph.

We use curtains, clothes, locks on your door. Non see-through backpacks; tinted, geometric, and/or frosted windows.

Clothes

When we weren’t taught to wear clothes (0-n years old) we had no shame of our naked body. We had to be told that it was shameful by our parents; and also through social learning this shame was developed. (Internet) Privacy is the same: we need to be taught, by someone else, the necessary knowledge before “going online” regarding privacy. This is because most people are walking around naked on the Internet. They have no idea about the concept of privacy; they can’t generalize parent and social-learning to the Internet, an abstract reality. “I have nothing to hide,” they’d often say, when you bring forward queries to probe their understandings to simile and parallelism or contraryism juxtapositioning. They in fact do have something to hide* and that’s their identity, meta-data, and feeding gold standard data into a model that is built on something called “social hacking,” (cite), which can scale down to a person versus person level—versus an organization versus person. Unfortunately, these naked people grew up not knowing any shame regarding their vulnerability, and because these people are many, we have supplied an opening for organizations to capitalize upon. We handed over responsibility and autonomy for convenience Let other people take care of my worries and responsibilities. I’ll let my life be automated. It’s the ultimate “gift” one can have today—it’s generally considered a desirable part of Western civilization (cite). It’s advancement for the sake of advancement. But these people live in houses, and whatever happens behind closed doors, happens behind closed door.

Houses Have Windows

Windows typically come in two flavours: with curtains, or with obfuscation such as frost, tint, or geometry. One is denial by defaut: curtains. One allows you to see given a certain angle: geometric. Another gives you a generally physical outline of whats happening behind the pane that gives better-than-chance guessing: frost, tint. These are generally employed by many people to increase the privacy of their house, from their neighbours. However, big picture clarity often isn’t frosted or tinted. Instead, it is clear, and employs a curtain which represents a denial-by-drafault approach as a computer equivalent. Front and tint are the levels of what your ISP can see: websites you visit, how many devices you own, their unique identifiers, and the moment someone comes to visit through wi-fi network discovery mechanisms (black hat talk); download and upload usage history, and they can save it for a definite period of time. Geometric is the ability for someone to insert spyware into your life: Windows (Microsoft) iOS, and Mac (Apple), Google services, Amazon services, conventional keylogging hackers, compromised keyboard from vendor, et cetera. They can ”clear glass" you with some effort. People have had hot mics from the various phone assistant or at-home hub style " voice controlling" which is a ridiculously propagandic term. Contrarily, the frost, tint, and geometric problem has a non-comprebensive solution: free and open source software (FOSS). This excellent and philosophical approach to software, ownership, and privacy, turns the used into users—owners. However, owning anything is a great responsibility*. This is the same idea as before. People are leaving behind responsibility for convenience. People would rather not own a house, and had the keys over to a landlord instead of owning a house they have to care for—windows, too. Not to mention the locks on the door which should be dead simple to see, and that making visuals or metaphors to explain it would be redundant and a bigger waste of time than this lengthy sentence.

Together

The naked apartment renter with transparent windows always open to the outside world and no locks on any door has to go outside for reasons—maybe to buy a Facebook subscription renewal card with a retina scan machine checkout. Because they’re naked, they need to take a backpack to carry their belongings: keys, identification, passwords, and maybe a some water that’s marinating in a transparent plastic water container. As they leave the house, they show the entire world, that is whoever wants to see, everything they have. Someone could walk up to their bag and take a photo of its contents. It shouldn’t matter.I have nothing to hide. But they are letting crooks’ jobs easy and baited. There are people who spend their careers exploiting those “backpacks** , and “house contents” to make money, a career. These are a professional-degree locked job. People are being data mined and enabling the use of that data. In large enough naked-people numbers, facts derrived from statistical questioning make those answers both powerful and generalizable. These population secrets can be sold, and if bought, they can be used to make a lot of money, in perpetuity.

Conclusion

So, for those who choose to wear clothes, lock their doors, curtain their windows, and use a canvas backpack, the entire effort has been ruined for the environment. When such big social numbers exist for movement such as for or avainst privacy, which only takes a minimum of 10% (cite) to achieve, being naked becomes the law of the land. Telling the naked people the good news of wearing clothing, they don’t want to hear it. They have to buy a washing machine, pipe the house they live in, get a closet with hangers, and so on.It’s too much effort and not worth it. Instead, the crowd runs the show.