Recently, my city passed a bylaw that makes mask wearing mandatory in all indoor spaces. I'm in Canada where "to mask or not to mask" isn't viewed with quite as much political polarity as our neighbours to the south. Yet, there are still those who don't feel they should be mandated to wear a mask, even if there is evidence that it can be beneficial at a collective level. I recognize that certain people (for medical and other reasons) may not be able to wear a mask. The city has approved an exemption in these cases. This post isn't going to be about masks, but the mask issue is a topical example of the tension between individual and collective interests as it relates to health.
Healthcare data: An anti-commons
The tragedy of the anti-commons is the lesser known cousin of the tragedy of the commons. In an anti-commons scenario, a single resource has too many individual rights holders or claimants, that prevent or limit the use of the resource for the common good. Historically, this may have been expressed in terms of public rights of way for land use, say for a railway or a pipeline (I won't go there!) that may benefit the collective.
Healthcare data might be seen in terms of an anti-commons. The value of healthcare data isn't so much in each individual record as it is the aggregated data sets. This data, however, is subject to many protections at the individual level which may restrict it's use as a collective common good. In Canada, those protections are governed provincially making national data sharing more challenging. In addition, there may be other rights holders, such as private companies, who have data not commonly thought about in terms of healthcare data, but which may serve beneficial in health applications moving forward.
Coordinating Canada's Healthcare Data
SPOR Canadian Data Platform is a nationally supported healthcare data commons run by Health Data Research Network Canada (HDRN). It's the coordinating body for a group of data centres that work together to allow health care researchers access to healthcare data that is held in different places and subject to many different rights holders at the provincial or territorial level. As the HDRN website explains:
"Currently, each provincial, territorial, or federal data centre has its own unique process for researchers to request access to data...Because of this, the process of requesting access to data from multiple sources can be challenging and very slow. As a result, many studies are limited to one jurisdiction, limiting the potential for comparing health outcomes between different provinces or territories." (HDRN)
Who "owns" healthcare data?
HDRN is addressing one level of the anti-commons problem but there is still the deeper issue around individual patient data. In their website FAQs, the question "Can I revoke or restrict access to my personal information?" is met with the answer "Please contact your local data centre for more information." Other tough questions like asking what your data was used for and whether it was used for commercial purposes yields a similar response. A quick search on two of the local data centre websites for Alberta and BC pointed at the respective health information regulations which provide general guides on how data is annonymized, privacy is respected and data secured. However, it doesn't really answer these other questions.
Looking at the issue of who owns patient data is challenging. As patients, we supply details about ourselves, but the data is collected, maintained and stored by others. In some cases, portions of the data are generated by the system. For example, we supply a blood sample, but the results of the lab tests to process that sample involved public health resources. So, is the resulting data actually our data or is it jointly held with the healthcare system? If it's stripped of personal identifiers and might be useful to further research, say a cure for cancer, wouldn't that we a good thing for everyone? But, what if that cancer cure is patented by private interests? Does that change the dynamic?
Healthcare Data and Big Tech
In addition to the patient - provider dynamic, the commercialization element is adding another layer to the use of aggregated health data sets. In many cases, it's big tech that is aggregating the data. Google Health is an interesting example because it started in 2006, shutdown in 2012 and then restarted in 2018 (and took over Deepmind's Health initiative in 2019). In the past two weeks, there's been significant investor interest in the area of genetic health data with the $4.7B acquisition of Ancestry.com and closer to home, the close to $18B acquisition of BC Biotech Coastal Genomics by UK company, YourGene Health. Healthcare is a lucrative business, especially in a COVID-19 world.
What is the right balance when it comes to navigating these trade-offs? Going back to wearing a mask to help protect others - that seems like an easy choice to me. Sharing my health data, even in an annonymized and aggregated form, is trickier. I'd like to know for what purposes and under what circumstances it would be used. I'd like to know my data wasn't used in ways that might serve to discriminate against others or cause harm. I'd like to see benefits accrue to the public rather than private interests. In other words, I'd like more of a say in the process.
Data, Ownership and Plankton - a great read that gives a UK perspective and helped inspire this post
Learn more about the HDRN
More about Google Health and why it shutdown. This article suggests it was ahead of its time and didn't do enough to engage channel partners. Google Health relaunched in 2018 under the direction of a new CEO.