Patient Safety Creates Patient Stories

At Health Quality Transformation 2014 the day started with two patient stories. The story in the opening remarks by Dr. Joshua Tepper demonstrated health care working well.

The other story was an analysis of what went wrong in the case of Greg Price of Alberta and was told by Dr Ward Flemons and David Price, Greg's father. Greg's case triggered a review of processes for managing dealings between referring physicians and specialists or clinics which offer specialized healthcare services in the Alberta Health Care System.

They have been sharing the findings of this Continuity of Patient Care Study with healthcare groups across the country. The gaps in Alberta are in no way unique to that province and this issue was not unique to Greg. This study came about because many Albertans gave co-ordination of care a poor rating in the HQCA (Health Quality Council of Alberta) patient experience survey.

Comments/Recommendations from this session:
Healthcare information is disconnected and laborious to track well enough to see the whole story, even for professionals.

There is a wall between the patient and the Electronic Health Records system. Patients are robbed of the information they need for their own care.

Patients should be able to track referrals made by their doctors to specialists who represent the next step in their care. Closed loop referrals would close the gap.

The motto of the Alberta Medical Association is "Patients First". We need to be clear who is accountable for the patient's health.

We need shortcuts for time sensitive conditions.

David Price had comments to make.

In healthcare there are multiple roadblocks, not a culture of seeking ways to make things better.

We need the key decision makers to listen to what patients need.

For most of the recommendations in the report there has been no change. How do we as patients get the system to listen and change?

If occurrences on his farm went wrong to this degree there would be a Hazard Analysis and all work would be halted. There are contrasting approaches between the food business and the health business. If you say standards are not do-able in the food business you are out of business.

If you read "The Cancer Olympics" by Robin McGee of Nova Scotia you will see similar issues to those in Alberta.

In Ontario my referrals to specialists seem to be lost or mislaid more often than not, so I know it happens here too.

Patient Safety

We all need to be proactive patients. Now I call a week after a referral to a specialists to make sure it arrived safely.

The only good sign to be seen is in BC where Delia Cooper, as the patient representative from Patient Voices with Providence Health Care and the Shared Care Committee was able to "facilitate interaction between family physicians, specialists and patients to develop and implement and processes to streamline care for patients with chronic conditions... This practice has spread provincially and patient referrals to specialists no longer fall through the cracks.

So if they can do it in BC you wonder what the problem is with the rest of the country.

Guest Post From Robin Magee. Evolution of Blogging

Robin McGee and I met at the Patients Canada Conference in 2013. She was brimming with enthusiasm to meet so many other people who were obsessed by health and patient issues to almost the same extent as she is.  I say almost because there aren't many of us who have written a book. 

Robin's book comes out in May and is titled "The Cancer Olympics".  I can't wait to read it.Robin's been blogging a long time in a private space and now she's ready to come out.

Here's Robin's post: You can find her @TCOrobin

Welcome to March Break. I am sure many of you are off skiing or sunning or visiting relatives. I am spending the week in Ottawa with my elderly parents, trying to provide what help I can. My parents still live in the house I grew up in. My mother’s cancer has spread to her lungs and liver now, and inasmuch as possible they hope she can stay in their home. She is tired and often in pain. I am glad I am able to do things for her – today I took her to get her hair done.

One more revision round was required on the book, and the (hopefully) final proof went in today. More errors that I am astonished that I and my professional proofreaders never saw: “latter” instead of “later,” quotes unclosed, punctuation misplaced, a misspelling of the word “tumour.” I am getting nervous that I won’t have it in time for the launches, but the publisher reassures that it should be no problem. Where are my fingernails?

This week I discovered a fascinating research paper about those who maintain illness blogs like this one. (Ressler, P., Bradshaw, S., Gualtieri, L., Kwan Ho Chui, K. Communicating the experience of chronic pain and illness through blogging. Journal of Medical Internet Research, 2012, 14, e143. Published online Oct 23, 2012. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3510726/

Using an online survey, the authors collected information from 230 of my counterparts: people who have kept a blog throughout the course of a severe illness journey.

The authors wrote very poignantly about the role of blogs for patients: “In her book, Narrative Medicine: Honoring the Stories of Illness, Charon [16] describes the experience of patients and families as they enter the divide between the sick and the well, a separation that often feels huge and unbridgeable to those navigating a new way of being:

“These divides between the sick and the well are unspeakably wide. Leveraged open by shame, rage, loss, and fear, these chasms can be unbridgeable. And yet, to get better, the patient needs to feel included among those who are not ill. The sick person needs to continue to be, somehow, the self he or she was before illness struck.”

Chronic pain and illness may have an isolating effect on individuals, changing their perceived roles in society and challenging their ability to find meaning in life and their illness. Creating connections between the world of the sick and world of the well can be important in the positive psychosocial functioning of individuals.”

The authors concluded: “Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment of online connections with others and increases a sense of purpose to help others in similar situations. Respondents reported that initiating and maintaining an illness blog resulted in increased connection with others, decreased isolation, and provided an opportunity to tell their illness story. Blogging promoted accountability (to self and others) and created opportunities for making meaning and gaining insights from the experience of illness, which nurtured a sense of purpose and furthered their understanding of their illness.”

I was interested to see that many of the bloggers became patient advocates – that this is a natural evolution for many besides me. Here are some of the qualitative responses made by my fellow bloggers:

“It started out with just my personal stories and then I started sharing research and attempted to be an advocate.”

“My blog content has changed mostly as I have a desire to spread more awareness and create a message that others will better relate to and understand.”

“I’ve come to terms with being ill, so there’s less ‘oh goodness it’s weird and scary encountering (insert fact of disabled life).’ I’ve become more political. And there’s more stuff without a disability angle.”

“I take more of a patient advocacy stance.”

“First I was helped, now I am helping...a reminder that I am part of the world.”

Recently, I have followed the blog of one of my CRC counterparts: a young mother, only 42, with a six-year-old child. Diagnosed only one month ago, she has metastatic disease in her liver and her lungs, and has just embarked on full-tilt chemotherapy. Reading her posts and the responses of her community is like stepping into the past: the terror, the bravado, the unknown.

Perhaps one day – God willing – I will see her write a post just like this one.