Robin McGee: Medical Error, Digital Health Failures
In June 2018 I finally met my fellow Patient Critical Co-op member and tireless healthcare advocate Robin McGee (Twitter). In a panel with Zayna Khayat (Twitter) and Dr. Sean Connors at the National Health Leaders Conference in St Johns, Newfoundland, Robin ‘came out’ to the conference as a terminal cancer patient. In a hearbreaking speech she captured the audience’s attention with her experience of multiple medical errors and the lack of digital health options available to her.
I am very happy have gotten to know Robin since she appeared on the Patient Critical Podcast. When the #htreads twitter chat put out a call for books chronicling healthcare and patient journeys, Robin was the person I recommended. Read a transcript of her #htreads chat here.
I watched this person I am proud to know stand in front of healthcare leaders bullish on the potential of digital health, and present them with one of many tragic realities of digital health. It was heart-wrenching. It was eye-opening. I sincerely hope Robin’s story helps prevent others from falling prey to medical error and holes in our healthcare system.
Imagine this: five hundred healthcare leaders in one room. I am the last speaker of the day, with seven minutes to talk. The plenary session I was in was about healthcare technology. Heads are going down. I walk to the podium.
I begin with my personal story: diagnosed with stage IV colorectal cancer, after two years and four doctors. Despite active symptoms and an immediate family history of CRC, I did not wait the standard wait of 60 days for diagnostic endoscopy– I waited 661 days. My diagnostic care was so truly terrible that the doctors on my pathway were disciplined by the College of Physicians and Surgeons for egregious cancer negligence. Brutal treatments lasting two years followed. That story, and the story of my community’s successful fight for best-practice chemotherapy in Nova Scotia (although too late for me to receive it), is told in my book The Cancer Olympics.
But lightening can strike twice. My cancer recurred after 7 years remission. An obvious 2cm tumour was missed by the radiologist during my routine CT. It took me 6 months of active lobbying to get the PET CT that revealed the malignancy. By then, the tumour had grown to 9 cms.
Sadly, after brutal chemotherapy and a recent 12-hour surgery, the evidence is that the cancer has spread to an inoperable location. My death is now a matter of time.
The heads in the audience go up.
I stress that if I had access to my records, I might have been able to save myself.
“I ask how many in the audience have access to a patient portal. Only a handful raise their hands.”
I conclude that what patients need and deserve is healthcare that is transparent, informative, and accessible. Healthcare technology must empower the patient. I sit down. Many come up to me afterwards, visibly shaken.
The following day, the audience watched the movie , about a young man who died of highly treatable testicular cancer due to medical delays and errors much like my own. Asked to comment at the audience microphone, I described how I once had a cancer surgery postponed because the pre-surgery MRI request went missing. Why? Because the fax machine at my hospital’s imaging department ran out of ink. For four days, because the usual secretary was out and the temp did notice, all imaging requests were ignored. No doctor and no patient was the wiser.
“We cannot have patients die because of ink cartridges,” I said. Sweeping my finger across all assembled, I challenged, “There is something you healthcare leaders can do tomorrow – eliminate fax machines in your organization. If you can’t do that, at least move to fax-to-email, so that there is an electronic record of the referral.”
A twitterstorm called #axethefax started after this conference. Andre Picard wrote a blistering article. With days, a tweet came to me from my province’s quality manager, saying, “Have already asked for the list of where we have them. Will see how many we can get rid of.”
Until my death, I plan to continue my dogged advocacy for patient safety. My talk at the 2018 National Healthcare Leadership Conference may result in needed change. Let us all, every one of us, hope so.