The May 2022 issue of Canadian Healthcare Technology magazine has a feature report on the expansion of Electronic Health Record (EHR) systems to include genetic data. The article touches on a very important point in the first sentence, that a pan-[insert country here] EHR systems are mostly far off in many places, but in my view these would undoubtedly be beneficial to patients.
There is a regulatory and privacy landscape to navigate in different parts of the world, and a, sharing information between various states, provinces or regions, let alone hospitals within a single geography, is mostly a process covered in red tape and facilitated by the disappointingly familiar CNG tone of fax machines over a telephone line. Patient and clinician friendly processes and interfaces, along with built-in data standardization, a focus on computer-readable data capture, and interoperability are key to bringing genomic medicine into the digital age. The complexity and enormous potential of genetics and genomics in day-to-day clinical practice requires new approaches beyond pen/paper records and new technology beyond facsimile and traditional EHR systems to take us towards a better, healthier future. I would encourage you to read the article (linked below) and provide your thoughts on the subject.
https://issuu.com/jerryzeidenberg/docs/canadian_healthcare_technology_2022-04/18
Dear Pawel Buczkowicz ,
Integrating genomic data into EHRs can boost clinical diagnosis, precision medicine, and the treatment of genetic disorders. It can also help improve clinical practices, conduct genetic research, educate clinicians on genetics, and save both time and costs.
https://ehrintelligence.com/news/why-is-genomic-data-ehr-integration-important#:~:text=Integrating%20genomic%20data%20into%20EHRs,save%20both%20time%20and%20costs.
Regards,
Shafagat
Dear Pawel Buczkowicz . Early diagnosis of a disease can significantly increase the chances of successful treatment, and genomics can detect a disease long before symptoms present themselves. So it is very important. See the link: https://www.nationalgeographic.com/science/article/partner-content-genomics-health-care
Kindly see also the following useful RG links: Article Choosing an electronic health records system: Professional l...
https://www.genome.gov/health/Genomics-and-Medicine
Also check please the following useful RG link: Article Integrating Genetic Data into Electronic Health Records: Med...
The following RG link is also very useful: Article Genetic data and electronic health records: A discussion of ...
Visit also the following useful RG links: Article Genomic Information for Clinicians in the Electronic Health ...
Article Integrating cancer genomic data into electronic health records
Article The interface of genomic information with the electronic hea...
https://www.nature.com/articles/s41436-020-01056-y
Beyond the "genetic" and "genomic" issues, the so-called "pandemic" has demonstrated the extreme and irrefutable weakness of electronic "tracking systems", in relation to the health of citizens.
There are attempts in the UK to link genomics data to health records. They come "the other way round" though - by which I mean, there are several projects working across the UK that are gathering genome data and lining it to healthcare data by attaching a duratedd health reacord for those participating patients next to and as part of the gemomic data management system. Why this way round? Two reasons (I think). One the very practical one - how the projects were funded as gemonic research projects (the 100,000 genome project). The other, it is easier to control the patient consent for research use in these realtivey small cohorts who have participated (you can guess how small by the title of the project).
Turning this around, of course it is the dream of personalised medicine to have your genetic knowledge contribute to a patient's healthcare.
For me though, this becomes more of a problem of patient privacy and consent for use of their data than a problem of data collection and management in itself.
In the UK (I think the same in Canada as far as I rememeber) there is a two level concept of:
a) use of data for direct care of the patient (where most patients wouuld probably not opt out of sharing their data in a shared care sstem - even their genetic data)
b) use of data for research - because then the question arrises, who will this research benefit - the patient themsleves? patients in the same geography? the profits of some AI or drugs company? Google has been burnt by this is the UK - patients did not like it.
And even (a) has nuances of course (patients don't want al their data shared with all parties in all circumstances). This is usually managed in HIEs and EHRs through provacy/consent (and associated RBAC) controls.
So, I think this is helpful. I always think of privacy/consent as a kind of meta-data. It depends from which point of view you are looking what the meta-data rules should look like. You could have the smae population of data (including genomic data) with a set of privacy/consnet rules for "my direct care", for "seondary use for research that benefits my population", for "secondary use for profit, and by the way, I want my share of those profits."
That way you can imaging bot proprietary (EHR type implementations) and open standards (HIE type implementations) working.
And no - no one has done this yet as far as I know.
- Badges
- Science topic
- Similar topics
- Agriculture