By: Annamarie A. Fuchs, Creator. Partners in Health | Conversations & Teri Price, Executive Director. Greg’s Wings.

July 6, 2023

 

Where is the life we have lost in living? Where is the wisdom we have lost in knowledge? Where is the knowledge we have lost in information?

T.S. Eliot.

Asking the tough questions.

Why did Greg Price die?

Because the system failed him.

Why did the system fail him?

Because it is designed that way.

What do you mean? Can system design increase the likelihood of harm?

Yes, but it’s complicated. People in the system are committed to delivering safe patient care. But information about the patient doesn’t automatically follow the patient. It often stays with the specialist, the primary care clinic, the inpatient department, or the organization where the patient receives care. Getting information where it needs to be when it is needed, continues to challenge system leaders.”

Continuity of care occurs when consistent quality care occurs over time. That only exists when the patient and the team work together and where all the information necessary for good decision making is readily available. Continuity of care reduces fragmentation of care[1] and increases the likelihood of quality patient outcomes.

Greg Price died a needless death largely because poor information design contributed to the lack of continuity care. That lack of continuity resulted in critical gaps in the availability of his clinical information to the right members of the healthcare team at the right time. Because we can’t know who the right members of the team might be at any given time, patients AND the entire healthcare team require reliable access to information.

Needless deaths in healthcare in Canada

  • Between April 2019 and March 2020, 8,400 Canadians died while waiting for healthcare.[2]
  • 18-year-old Laura Hillier of Burlington Ontario, had been diagnosed with acute myeloid leukemia in 2015.[3]
    • She needed a bone marrow transplant but despite finding a donor, waited 7 months for the operation.
    • She died while on the waiting list on January 20, 2016
  • In 2017 the Canadian Patient Safety Institute[4] reported the following:
    • Over the next 30 years in Canada, within acute and home care settings, there could be roughly 400,000 average annual cases of patient safety incidents (PSIs)costing around $6,800 per patient and generating an additional $2.75 billion in healthcare treatment costs per year. The PSI’s and costs incurred are all preventable.
    • In terms of mortality, PSIs in total rank third behind cancer and heart disease with just under 28,000 deaths across Canada (2013). This is equivalent to such events occurring in Canada every 1 minute and 18 seconds and resulting death every 13 minutes and 14 seconds.

Information can enable clinicians to save lives. When it’s lacking it can contribute to needless deaths.

At the time Greg Price died in 2012, I was a member of the Board of Directors for the Health Quality Council. When Greg’s story became known to us shortly after his death, we began work on the “Continuity of Patient Care Study[5]” which was released in December of 2013.

In the year after the release of the HQCA report, I attended the Accelerating Primary Care Conference in Edmonton (2014). Dr. David Moores from the University of Alberta talked about 31-year-old Greg Price from Alberta and young Robbie Powell, an 11-year-old boy from the UK who died in April 1990.[6]  Both died because their health systems failed them.  Both died when critical information was not available to support clinical decision making. Both were needless deaths.

When does clinical information become critical information?

At Partners in Health | Conversations, we believe that any clinical information about a patient can be critical to support decision making at some point in the patient’s journey through the health system. Greg Price and Robbie Powell are tragic examples of exactly this point.

In February of 2023, the National Health Service’s Healthcare Safety Investigation Branch (HSIB) released a report focusing on access to critical patient information.[7] In the full report[8], they defined critical information as “information about patients that needs to be accessed rapidly and accurately to ensure correct care is delivered when it is required.” They also pointed out the following that must be addressed if access to critical information will indeed be available to the team when needed:

  • Concerns around confidentiality can prevent the display of critical patient information.
  • There is no national guidance to support consistency and visibility of critical patient information on low tech displays such as white boards or posters, or high tech displays such as digital systems.
  • Limited interoperability of multiple digital systems means critical patient information may not be accessible or consistent across all systems used in the care of a patient.

These same problems contribute to risk of harm across virtually all health systems in the world. But let’s not forget that this risk doesn’t only affect patients and their loved ones. It erodes the confidence of healthcare team members as well. In an ideal world, the healthcare team should be able to count on the fact that the right information will always be available to them to enable them to safeguard optimal patient care. Perhaps it would be more straightforward for policy makers to treat all clinical information as critical information. If lives depend on it, we have an obligation to design policies, processes, and systems to ensure this is the case.

Ownership versus stewardship of information.

In our discussions over the years, Teri and Dave Price and I along with numerous other subject matter experts and stakeholders have advocated for strengthening patient access to information. We believe that if patients have access, their involvement in clinical decision making will be strengthened and their efforts to advocate for timely care may help contribute to improved outcomes. But over time, it’s become clear that access to information is essential for every member of the healthcare team if we want high performing teams delivering exceptional quality care in collaboration with those patients (and/or their designated advocates). To make the right decisions and the safest decisions that can save lives, the entire team needs access to patient information. Ownership suddenly becomes less important as a concept than access and stewardship.

As a health professional, ask yourself who you’re capturing clinic notes for. Are they for the patient, for your protection, and for other team members? The custodial model for the protection of health information has contributed to an environment where clinicians feel an overwhelming sense of responsibility to protect patient information and that alone leads to an incongruous sense of ownership that lies at the heart of many of the gaps in access to information.

Rather than spending time focusing on issues of ownership, we need to be committed stewards of patient information. Efficient and transparent access to patient information for everyone who requires it enables excellent teamwork. A stewardship mindset can unfold if we revisit privacy legislation, particularly where it dictates how to collect, use, and disclose patient information and for what purpose.

Final thoughts – for now.

Eleven years after Greg’s death, our conversations about access to information, teamwork, and person-centered care continue. Progress is difficult. It is advancing far too slowly, and the cost of continued inaction is just too high. Dr. Don Berwick said it well in 2006 when I attended a “5 Million Lives campaign event in San Diego. He reminded everyone that…

The names of the patients whose lives we save can never be known. Our contribution will be what did NOT happen to them. And, though they are unknown, we will know that mothers and fathers are at graduations and weddings they would have missed, and that grandchildren will know grandparents they might never have known, and holidays will be taken, and work completed, and books read, and symphonies heard, and gardens tended that, without our work, would never have been[9].”

The loss that the families of Greg Price, Robbie Powell, and Laura Hillier have endured both privately and publicly is incomprehensible. The least that we can to is to assure them that their stories have become the tipping point for the widespread system change that is long overdue.

 

References

[1] https://www.aafp.org/about/policies/all/continuity-of-care-definition.html

[2] https://news.yahoo.com/8-400-canadians-died-while-030000960.html?guccounter=1&guce_referrer=aHR0cHM6Ly93d3cuZ29vZ2xlLmNvbS8&guce_referrer_sig=AQAAAMCj1xMB1KMoUHx_YVpfvuh9QS9fT2PXNXH2d3GN7LnBvtThGZxW7wrgya210LmcnQ5YgJ2MV1I_dDW708qVRsEWbwqNbOmAJC39OByhhtmBLGPXTT5t7ALJbdBiodl4nGkDGJ4qvfNKY9A2Tecrl67cyp8HEmQwgJmpxTeq2TG3

[3] https://news.yahoo.com/8-400-canadians-died-while-030000960.html?guccounter=1&guce_referrer=aHR0cHM6Ly93d3cuZ29vZ2xlLmNvbS8&guce_referrer_sig=AQAAAMCj1xMB1KMoUHx_YVpfvuh9QS9fT2PXNXH2d3GN7LnBvtThGZxW7wrgya210LmcnQ5YgJ2MV1I_dDW708qVRsEWbwqNbOmAJC39OByhhtmBLGPXTT5t7ALJbdBiodl4nGkDGJ4qvfNKY9A2Tecrl67cyp8HEmQwgJmpxTeq2TG3

[4] Canadian Patient Safety Institute. The case for Investing in Patient Safety in Canada, August 2017. https://www.guelphtoday.com/spotlight/medical-mistakes-are-the-third-leading-cause-of-death-in-canada-5787771#:~:text=The%20statistics%20are%20alarming.,behind%20heart%20disease%20and%20cancer.

[5] https://hqca.ca/wp-content/uploads/2021/12/Dec19_ContinuityofPatientCareStudy-2013.pdf

[6] https://www.open.ac.uk/researchcentres/herc/blog/robbie-powell-time-truth-justice-and-accountability

[7] https://www.hsib.org.uk/investigations-and-reports/access-to-critical-patient-information-at-the-bedside/

[8] https://hsib-kqcco125-media.s3.amazonaws.com/assets/documents/hsib-report-access-to-critical-patient-information-at-the-bedside.pdf

[9] http://www.ihi.org/Engage/Initiatives/Completed/5MillionLivesCampaign/Pages/default.aspx

 

 

 

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