Medical archivists, the wizards of clinical data

When Judith, Lina and Maude mention what they do for a living, they often get a look of surprise, confusion or puzzlement — and sometimes all three! With their strong personalities and cheerful demeanours, they simply don’t fit the image that some people have of the profession. Contrary to popular belief, medical archivists don’t just file paper away in a dark basement. Our three interviewees not only manage medical records throughout their life-cycle, they also design and collect, organize and analyze, disseminate and protect the vital data they deal with.

And this is no small feat since the health and social service sector is one of the biggest producers and consumers of data. In addition to the data generated by labs and clinical research, hundreds of thousands of workers produce data every day, whether for the purposes of reports and clinical observations or through tracking software such as clinical pathway tools (OCCI).

What kind of data?

The term “clinical-administrative data” refers to all the information held by healthcare institutions (mainly the MSSS and RAMQ in Québec) that makes it possible to organize and optimize care and services. A clinical-administrative database contains information about the health of service users, such as their diagnoses and treatments, as well as about their care pathway, including length of hospital stay, dedicated resources, and so on. This data can then be used to obtain an overview of healthcare organization with a view to assessing, planning, optimizing, and financing care and services.

Medical archivists don’t just manage medical records throughout their life-cycle – they also design and collect, organize and analyze, disseminate and protect the vital data they deal with.

Inside the data cycle

Whatever use is made of it, the data must be complete and compliant with all applicable standards; it can only be transferred in conformity with precise rules, and it must be preserved — and eventually destroyed — in keeping with specific protocols. Disclosure is governed by strict rules based on existing laws, regulations and policies. Medical archivists are involved at every stage of the data cycle; in a word, they’re the clinical-administrative information managers.

Creating and collecting data

Wherever they work, at whatever kind of institution, medical archivists play an indispensable role in the process of creating, collecting and analyzing data. For Judith and Maude, who both work in hospitals, this means collecting the clinical information recorded in a patient’s file by the various care providers, and then coding the diseases and procedures themselves as per the accepted nomenclatures with the help of specialized computer tools. They may also be called upon to compile, verify and extract data from more specific Québec clinical data registries—tumours, traumas, heart attacks—or contribute to the work of committees such as the death review committee or the committee on medical evaluation. As front-line information providers, they just might know more about your patient than you do, without ever having met the person!

By contrast, at the CLSC where Lina works, each family medicine group (FMG) and diagnostic service provider is responsible for generating their own data based on their interactions with service users. Consequently, they need to be properly trained to capture and enter data in compliance with the standards of the health and social services ministry (MSSS). This responsibility falls to Lina. Rather than coding, she works closely with the various clinical directorates as well as the workers and administrative staff, so she’s rarely alone in her office!

Wherever they work, medical archivists have to have a substantial grasp of computer science as well as medicine and biology to able to understand the data involved in designing and analyzing biopsychosocial records. They can also use this data for statistical, evaluation or research purposes.

Disseminating and protecting data

Medical archivists also safeguard the protocols for preserving and disclosing data: how long it should be preserved; what media should be used to record or transfer it; when and how it should be destroyed; who can access it and under what conditions.

Judith and Lina, who both work in the access-to-information department, receive dozens of such queries every day from people who work in a variety of fields: medical clinics; government bodies such as the CNESST, the SAAQ, the Régie des rentes, and youth protection; insurance companies looking for information about the health status of prospective clients; lawyers seeking evidence to plead their case; even curious heirs. It is up to medical archivists to protect service users’ rights and it is therefore also their responsibility to assess the validity and relevance of each request. Of course, this requires full knowledge of the prevailing legal framework as well as a clear understanding of the rules of ethics.

A digital transition will usually encounter some bumps in the road. It’s a big challenge that involves managing an astronomical amount of information, produced by myriad stakeholders and recorded by means of many different applications and software.

Organizing and reorganizing data

Given all their knowledge and experience, there is no one better equipped than medical archivists to figure out the best approach to organizing clinical-administrative data. In 2020, they received an invitation from the MSSS to join the working group on digital health records (Dossier de santé numérique), which aims to digitize the medical records of Quebecers. However, it is rare for a digital transition not to encounter some bumps in the road; more typically such shifts prove far more complex and time-consuming than expected. It’s a big challenge that involves managing an astronomical amount of information, produced by myriad stakeholders and recorded by means of many different applications and software. Maude knows a thing or two about this as she heads up the computerization and digitization project where she works: “It’s a serious challenge to get everyone to cooperate, to bring missions together and break down silos,” she explains. But rather than getting discouraged, she recommends enlisting the expertise of medical archivists early on in the process. “It’s important to involve us early on, in the implementation and development strategies, and not just in running the system after the fact. That’s the best way to proceed with the digitization of the healthcare sector in an efficient way, with due regard for Quebecers’ ethical values and their right to privacy.”