Access to Your Health Record

Blog post by Colin Hung.

This week’s #HCLDR chat is inspired by Canada Health Infoway’s ACCESS 2022 campaign. This campaign is designed to encourage the digitization of health information and interoperability in Canada.

Canada, despite having a single-payer healthcare system, does not have a country-wide longitudinal health record for each of its citizens. This is partly due to the way the health system is administrated (each province in Canada runs its own health system funded by federal dollars) and partly due to a lack of technology infrastructure.

For active participants on our #HCLDR chats, you have no doubt seen remarks lamenting the use of fax machines made by Canadians like: Sandra Woods @SandraWoodsMtl, Pat Rich @pat_health, Annette McKinnon @anetto, @couragesings, and @seastarbatita. The sad fact is that fax machines continue to be a relied-upon technology for sharing patient records in Canadian healthcare. In many cases there is no other viable method to quickly share records.

Canada Health Infoway would like to see an end to the fax machine in healthcare and would like to see more advanced technologies adopted to ensure everyone who wants/needs access to health records can have it. That’s the goal of the ACCESS 2022 campaign.

ACCESS 2022 is a multi-pronged program designed to encourage all members of the Canadian healthcare ecosystem (government, health systems, physician practices, advocacy groups and even patients) to push for the adoption of digital health technologies.

I was recently asked to participate in the ACCESS 2022 campaign and I’m excited to contribute. As a “true believer” in Health IT, I’m happy to be part of any initiative that increases the use of modern digital technologies for the benefit of clinicians and patients. I’m also very interested to see, first-hand, how a blended grass-roots + top-down campaign works.

What I like most about ACCESS 2022 is that the goal is about gaining access to health records for everyone. Clinicians need access, administrators need access, a researchers need access and, of course, patients need access.

Patients and clinicians don’t have a lot of power in the healthcare system when it comes to the adoption of digital health, yet paradoxically these are the two groups most impacted by the lack/inadequacy of systems. The government and healthcare provider organizations, on the other hand, control the budget for digital health. Until recently, digitizing health records was simply not a priority. In fact, at many hospitals in Canada paper records are still the norm – with only the periphery elements like images, labs, and prescriptions being digital. Hard to believe in 2019.

However, by being behind the digital health adoption curve, Canada has the opportunity to learn from others. It can incorporate the upload of patient generated data (PDG) into interoperability guidelines where other jurisdictions are having to go back and retrofit it. Canada can also learn from the successes and failures in Australia, the US and the UK on how to build a financially sustainable model for health information sharing.

Please join me on Tuesday February 26, 2019 at 8:30pm ET (for your local time click here) when we will be discussing access and interoperability of health records. As always we welcome the opinions and viewpoints from patients, clinicians, administrators, government officials…anyone who has an interest in making our health systems better.

We will be discussing the following questions:

  • T1 Has the inability to access your health record impacted you? What happened? What was the outcome?
  • T2 What information within your health record would you want access to first (what’s most important)?
  • T3 What Patient Generated Data (PDG) would you like to be able to add to your health record? Why?
  • T4 Currently there is little financial incentive to share health records. Does this mean governments have to intervene or can market forces open data sharing?

Resources

Access 2022 website: https://www.acces2022.ca/

Green, Michael. “ACCESS 2022: Our Plan to Reclaim our Place as a Leader in Health Care”, Canada Health Infoway, 14 November 2018, https://www.infoway-inforoute.ca/en/what-we-do/blog/access-to-care/7976-access-2022-our-plan-to-reclaim-our-place-as-a-leader-in-health-care, accessed 23 February 2019

Glauser, Wendy et al. “Why can’t you access your health record online?”, healthydebate, 12 July 2018, https://healthydebate.ca/2018/07/topic/patient-medical-record-online, accessed 23 February 2019

“Canadian patients should have online access to their medical records, some doctors say”, CBC, 2 August 2018, https://www.cbc.ca/news/health/patient-portals-for-access-to-medical-records-canada-1.4771787, accessed 23 February 2019

Farr, Christina. “Amazon confirms it’s working on a project to mine patient records and more accurately diagnose diseases”, CNBC, 27 November 2018, https://www.cnbc.com/2018/11/27/amazon-is-working-to-mine-patient-records-to-diagnose-disease.html, accessed 23 February 2019

Locklear, Mallory. “Amazon’s next healthcare move is software that can mine medical record”, Engadget, 27 November 2018, https://www.engadget.com/2018/11/27/amazon-software-mine-medical-records/, accessed 23 February 2018

Wickard, Amanda. “Are We Ready to Treat Patient-Generated Health Data?”, Journal of AHIMA, 6 September 2018, https://journal.ahima.org/2018/09/06/are-we-ready-to-treat-patient-generated-health-data/, accessed 23 February 2019

Nittas V, Mütsch M, Ehrler F, et al. “Electronic patient-generated health data to facilitate prevention and health promotion: a scoping review protocol”, BMJ Open, 10 August 2018, https://bmjopen.bmj.com/content/8/8/e021245, accessed 23 February 2019

Genes, Nicholas, et al. “From smartphone to EHR: a case report on integrating patient-generated health data”, NPJ Digital Medicine, 20 June 2018, https://www.nature.com/articles/s41746-018-0030-8#Abs1, accessed 23 February 2019

Marr, Bernard. “How Is AI Used In Healthcare – 5 Powerful Real-World Examples That Show The Latest Advances”, Forbes, 27 July 2018, https://www.forbes.com/sites/bernardmarr/2018/07/27/how-is-ai-used-in-healthcare-5-powerful-real-world-examples-that-show-the-latest-advances/#48ea32e15dfb, accessed 23 February 2018

Reynolds, Tera L. “Understanding Patient Questions about their Medical Records in an Online Health Forum: Opportunity for Patient Portal Design”, AMIA Annual Symposium Proceedings Archive, 16 April 2018, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5977702/, accessed 23 February 2018

Image Credit

Shutterstock Licensed Image

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