Friday, 11 April 2014

Design in Health

Thinking about design as it relates to health, the skeleton strikes me as a template. It may not be an elegant example of design but we do know that it works and over the short term it can adjust to changes. Even more amazing in the long term it can evolve.

This one is done evolving but still very useful to many

It doesn’t look elegant, it's got too many fiddly bits and weak spots but it is functional and effective. Those two features are essential parts of design.

If we had to construct something else to replace our skeletons it would not look like the replica above. 

With our bones as framework we can influence the way we look to others. With such a solid base lying below our skin and muscles we have many choices about the way present ourselves.

That's one of the difficulties of chronic illness. It takes away some of the possibilities that we may want with great intensity. In my quest for a less stressful life I have (mostly) adapted to the losses. Acceptance has helped me to cope.

I'd bet no one is surprised that there is a study about this very topic.

The process of acceptance among rheumatoid arthritis patients in Switzerland: A qualitative study. The conclusions can apply to other chronic illness but I picked RA for sentimental reasons.

This post is in response to the #MedX assignment on Designing For 
Health, though it meanders away from the topic.

Tuesday, 1 April 2014

Why Is My Silo Two Miles Away?

Today I was watching a youtube video of the Institute of Health Services and Policy Research (IHSPR) Policy Rounds - Improving Care of Multiple Chronic Conditions webinar from March 26, 2014. I found out that in Ontario chronic disease accounted for at least 65% of direct health care costs in 2010/11 and it would not surprise me if that number is typical in Canada. In the US that percentage might not be accurate since the health care system is different.

The Steering Committee that set direction for this discussion was composed of government and researchers who picked stakeholders to participate in the discussion about issues and challenges involved in dealing with patients with multiple chronic conditions. They were chosen because they could bring unique views and experiences to bear on the challenge and they could champion actions to address the problem creatively within their constituencies. (Michael Wilson, PhD)

The part that really caught my attention was the breakdown of participants involved in the stakeholder dialogue
3 Policy Makers
9 Managers
3 Providers
5 Researchers

One of the statements produced stressed collaboration both within teams and also across silos with the emphasis that each silo brings unique value to the overall goal. The plan is to continue to support bottom up and person centered approaches to developing models of care and working across silos.

The patient silo is miles away

At this point I'm really wondering why the patient silo is off in this field miles away from the other silos. After all where does the money in the health system come from?  There is only one source - the taxpayers. Why are patients not considered stakeholders? If we want to work across silos I think they all need to be considered and included.

As much as some health care professionals fear the intrusion of the engaged and educated patient, it seems that policy makers and planners are even more worried about patient inclusion in health care planning. (Apologies to the rheumatology researchers who are including patients)

Among the suggested strategies is developing a patient centered approach to health care and using patient friendly language. There are now more patients eager to be engaged in their own care; that will help. One of the tools to deal with multiple chronic diseases will be self management. "Using innovative, collaborative approaches to developing and supporting use of self-management tools and resources" as well as including older adults and those with chronic health conditions in random trials are other methods of making progress in this area.

It was a very useful webinar that made perfect sense. But again we don't see patients included in policy and planning. I feel that is a problem. As ePatient Dave says "Nothing about us without us."

Sunday, 23 March 2014

Tweeting Links to Research Studies

When I decided to use Twitter I thought that tweeting a link every morning to a paper or abstract about Rheumatoid Arthritis would be useful to others and a way to contribute to the conversation. There is so much new information coming out always that staying current is a problem for everyone.

That plan has worked out well. I can stay abreast of what's new and it's easy to share on Twitter. You might wonder how I choose among all the new papers. It's easy - I pick what interests me. Here are some reasons for avoiding certain topics.

First I don't post animal tests because I want to find knowledge that is closer to being applicable to people like me.

We could test on this rat

Second I need to have at least some understanding of the subject matter. That's why I did not post this one:
Rho-GTPase signaling in leukocyte extravasation: An endothelial point of view.  

Third, case studies don't seem broadly relevant to me as a patient.

Finally I want to learn something from the links I find, even if it's only a small insight or fact.

Here's an example of a study I plan to Tweet: 

A proof-of-concept study of ANSWER, a web-based methotrexate decision aid for patients with rheumatoid arthritis.

"For patients with rheumatoid arthritis (RA) who are considering methotrexate, we have developed a web-based patient decision aid called the ANSWER (Animated, Self-serve, Web-based Research Tool)"

When I first heard of decision aids I was really excited by the concept until I found out they were talking about pamphlets. There's been a lot of progress since that day years ago and now you can find interactive fact-based online tools that are truly geared to the needs of an individual. This paper tested a method of helping patients choose whether or not to take the usual first step in the treatment of RA, using methotrexate.

When I looked for more info (really I liked the poster picture) I found another paper that provided more background about the usability testing of this tool. That's the beauty of looking on the internet - you usually find even more than you expect.

That's why the above link is the perfect choice. This research is done by The Arthritis Research Center in BC so it's Canadian and very applicable to people I often talk to online. Of course the decision whether or not to take methotrexate is one I made long ago, but it applies directly to people with a new diagnosis of RA, and there are many of them online.

Using the theory that it's harder to find answers when you don't know the questions is one of my reasons for sharing useful tools and answers I find in my own searches.

Also when I start my searches with links to papers published in a journal that is included on PubMed it makes me feel more comfortable with the likelihood that the facts are accurate. 

And here's a link where you can actually try this web-based decision aid for yourself out for yourself:

Answer Tool at ARC Canada

Crossroads picture from ARC, others my own

Saturday, 15 March 2014

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.

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.

Monday, 3 March 2014

Blogging and Connections

When I started to blog gradually realized that I had good practical tips learned through being a patient with chronic illness for over thirty years. That's the first reason I blog and share details of my own health on social media.

I jumped in head first

As a patient I had already discovered that the best way to find the in-depth learning I needed was to talk to communities of patients. Sjogren's World helped me to realize I had Sjogren's Syndrome long before I got a diagnosis. I joined a yahoo group of people with shingles who held my hand and supported me with information from their experiences. In another more social group, after ten years we share the good and bad as life goes on. 

On the #MedX Engage/Empower course and Twitter discussion on February 20th, 2014 I heard Gilles Frydman @gfry and Roni Zeiger @rzeiger talk about the way patients form networks of microexperts and "amplify the collective intelligence of the members."

I think that's what we're all trying to do with our blogs. Add another voice to the rivers of patient experience that are starting to grow in strength and power. The current is moving away from the patriarchal hierarchy where health care knowledge is held by a few. 
You never know who your audience is

My life with chronic disease developed in the usual way. I started with pain, depression and feeling that I was weak and unable to fully participate in a normal life. It was not possible for me to have a full life in all of the areas that were important. If I worked full time then social life, career development and even family would suffer due to lack of energy. I proceeded like this for years - my doctor said my RA was well-controlled but obviously the lack of energy affected my life so his version of "control" did not match what I expected.

Love to give directions but hoped for more energy than an inukshuk.

But there were some turning points - when I successfully advocated for treatment change and another when an offhand compliment encouraged and even energized me.

Now I have adapted to the life I have and the results have been unexpected and positive.

The second reason I blog and share on social media is that I benefit too. This statement from the research paper below really makes sense to me.  

Communicating the Experience of Chronic Pain and Illness Through Blogging  by Pamela Katz Ressler, RN, MS, HN-BC,corresponding author#1 Ylisabyth S Bradshaw, DO, MS,#1,2 Lisa Gualtieri, PhD, ScM,#2 and Kenneth Kwan Ho Chui, PhD, MS/l

"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."

It's all about the connections. There's no other way possible to connect with such a great group of people involved with and interested in health care at every level.


This post is part of a blog carnival: "Why do you blog or share through social media about your illness?"

Here is a link to a previous post that I called Fruit vs the Blog exploring the question of which is better for your health - eating fruit or blogging? Of course there's no way to compare.