Getting Involved as a Patient Advisor: The Hackathon Files

In the middle of October I was a judge and patient advisor at a Hackathon put on by the Arthritis Society at the MaRS Discovery District in Toronto. #ArthritisHack

I had never been to a hackathon before, and to be a judge on my first experience was worrying, but one thing I know a lot about is living with arthritis, apps for chronic illness, and patient engagement. That helped me to take the step into the unknown.

You might wonder what actually happens at a hackathon and how a patient or caregiver can get involved. I found out it's all about design, like a race to produce a great solution for a problem in the space of a weekend or less. Those involved in doing this include software developers, graphic designers, interface designers, project managers, and in this case rheumatologists and patients who have arthritis as experts on the subject of arthritis.  

A Hackathon incorporates a user-centered-design process, so the creators start by talking to the intended users of the applications they plan to build.

Hackathon themes

The first night got off to a great start with introductory speeches from the sponsors and #HackingHealthTO. Patient group leader Dawn Richards was there from CAPA (Canadian Arthritis Patient Alliance) and spoke about arthritis and the issues involved to put the disease into perspective for the teams and sponsors.

CAPA VP Dawn Richards inspiring the teams

Some of those attending as mentors were good friends who I have met through other engagement activities.

Karen and me above; Lene Andersen of The Seated View blog in lower picture

There were 11 teams there using their skills and creativity to produce the next amazing app. Both patients and doctors gave advice about what was practical, desirable, useful - what would make the app something that could help people.

Mike Stone of Lilly Canada and Dr Rachel Shupak

Dr Philip Baer with Isabel Vezina of Hacking Health and Michelle Mika 

The Arthritis Society held this event with sponsors Eli Lilly Canada  and Cossette. The Lilly team produced the food and display below to illustrate some of the problems involved with rheumatoid arthritis. The prizes for winners of the competition include coaching and marketing help to the winning solutions into shape to compete for people's attention.

Opening jars and lifting cups are other issues with joint damage from RA

It was great to see so many people pitching in to help people living with arthritis. 

Here's everyone involved in the Hackathon - the big team

And here's a picture of the winning team- Team Kizuna

The winner was an app that is all about community. You'll have to wait for the future to see it in action. Keep watching The Arthritis Society website.

Janet Yale of The Arthritis Society

And Janet Yale, the CEO of The Arthritis Society, gave us a final goodbye with thanks for all of the great ideas and great results.

This post also appeared in the Canadian Arthritis Patient Alliance Newsletter December, 2017

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.

Blogging and Connections

When I started to blog I 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,#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.

Connections

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

http://restoringqualityoflifeblog.org/2014/03/05/blog-carnival/

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.

When You Know You're Sick and the Doctor Says No

We are the experts on our own bodies so if you go to the doctor with serious concerns and are dismissed with an offhand "Take 12 aspirins a day and come back in three months" you would not feel understood.

There's been a lot of talk about Dr Google and how he is an unreliable help to patients, but Dr G is there for you at all hours of the day and night, not like Dr Revolving Door. 

In my experiences the interested, engaged and enlightened doctors on Twitter and on their own blogs are exceptional. Not all doctors post videos about issues they commonly see to make life easier for themselves and their patients, nor do they make themselves available through social media to connect with others.

There are still a lot of adequate (or less so) doctors out there with blind spots and poor awareness about certain health problems, particularly if the diseases are less common. If you sent them a herd of zebras and horses we would all have horse problems and no zebra would be diagnosed.

                            Not all 4 legged quadrupeds are horses    AMcKinnon

I agree that the best way to find trustworthy online resources would be to get some guidance from the medical profession but a doctor who diagnoses you as fit or barely ill is usually unlikely to feel you need guidance on where or how to follow up so that you can learn more. 

Likewise if you don't think that those nagging pains or odd feelings add up to enough of a problem to see the doctor then Google may be helpful in alerting you that you should discuss these changes with a professional. 

When I was dissatisfied with my non-diagnosis all I did was go to see another doctor who turned out to be as blind as the first. He gave me stronger drugs at increasing doses for treatment as I continued to get worse. Seeing him was not empowerment on my part, just a defensive move. When it got really bad I gave up on the two of them and went to a surgeon - finally a proactive move! And the surgeon diagnosed the problem and sent me to a rheumatologist.

I could have been more insistent in the first and second encounters and tried to get a more helpful answer but I was an inexperienced patient and no match for the polished dismissive skills of the doctor. In fact when you're sick your thought processes are less effective so that does not help you to make progress in getting a diagnosis.
The consequences of a missed/delayed diagnosis can be serious. That's where support groups and online resources are at their best.  People who have gone through a similar experience know a great deal that can help you. 

The old adage "If it's not broke don't fix it" which accounts for some well thought-out watchful non-treatment doesn't always help. One person's "not broke" is another person's "I can't live like this. I have a serious problem."  I don't want to end up with this on my tombstone.

                                      from keywesttravelguide.com

http://www.ncbi.nlm.nih.gov/pubmed/18155338

Reconsidering patient empowerment in chronic illness: a critique of models of self-efficacy and bodily control.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3056146/?report=classic Identity and psychological ownership in chronic illness and disease state

Ten Tips to Feel In Control With Chronic Illness

It's easier to cope with chronic illness if you feel that you have some control over your life and your health.  When everything seems to be spinning away from you, life is harder to manage.  

Here are my first and best ideas to help with this.  More suggestions are welcome -  please leave your ideas in the comments.  Everyone loves to hear tips.

Lifesavers

With chronic illness you are forced to be your own health manager so it is up to you to gather information to help you make better decisions. You need to learn skills for this complex task as you go along, because the days of good health and no worries are behind you. Yes, there is always the hope of having them return but in the meantime try to find the management style you are most comfortable with.

1. Participatory
2. Director
3. Teamwork - recommended    

                 I'm in charge here

The first suggestion I would make is to join an online group or community.  They can be a great source of information and encouragement.  It's harder to find a physical real-time group than one that is on-line. It is also easier to spare the time for online efforts. 
Yahoo has a more old-school type of healthcare support group e.g. RA-Support and ra-factor are two of thousands.  People get to know one another well over the years.  Then there are "boards" like Sjogrens World or Rheumamisfits, where a consistent group of people can offer all kinds of experience and advice. 

On Twitter it is easy to become part of the #rheum, #chronic or #spoonie community. Also blogs like The Seated View and RAWarrior and numerous others can be sources of support and information. As you become comfortable with a group they can often act as your cheerleaders for encouragement and of course you can cheer them on too.

                                       

Support Group

Number 2 on the list is educate yourself.  Start small and learn the vocabulary of your specific problem. Then start learning more details. It makes a lot of difference if you know what the options are likely to be before you are faced with them. That helps you to stay in the front seat, even when you are not the driver.

#3  Start now to collect tips about good doctors, clinics, possible treatments and other types of health care professionals who may be able to help you, if not now, maybe in a few years. When you need them it's much easier if you keep track as you go along. 

#4 This one is purely practical. Try to build up a small surplus of your most essential medications.  Every time you forget to take one put it in your "extra" vial.  You never know what can happen - hurricane, earthquake, pharmacy fire.  You don't want to be desperate because you are running out of medication. It's another way to have  control.

                                   Drugstore Fire gainesvilletimes.com

#5 I suggest you journal or blog. There's a post about that here so if it attracts you as an idea you can see the reasoning and read a paper about what it can do for you.                                      

#6  It's good to feel that you always have a possible "move" that you can still make or plan that can improve the way things are going for you.  Whether I'm waiting to see how a new treatment works before going on to the next, or just still have pain treatment possibility that I don't always use or need, I feel much more in control if I have a strategy that may help if things get worse. 

For instance in the pain area I have a TENS machine as well as alternative pain pills that I don't use very often. This means that I can often treat my own pain safely and go to the doctor less often. Also I don't feel backed into a corner. That can make people feel desperate.

No, going to the vet is out of the question

                                   
#7  It's worth being open to trying different ideas. In my case, though I feel that medication is in general working for me I would consider trying massage, acupuncture, change of diet, specific exercise and so on.  There is little I rule out completely except things with no proof at all or that sound to good to be true. I've also learned it's a bad sign when people on social media try too hard to get you to use their wonderful remedy.


#8 It's good to feel that you can control and improve at something - anything.  For instance there are many brain exercises free on line.  One is Beat the Chimp.  Getting through the sudoku or crosswords every day is another example of control as is any creative and fulfilling experience you engage in, including crafts and puzzles.                           

#9 You can take a leaf out of Neil Pasricha's book and start your own Book of Awesome.  There are many things in people's lives that can lead to small moments of joy.  Open up a folder on your desktop and find a happy picture every day to put in it, if you can't find things any other way.
                                       

Thinking of summer

#10  Pets can keep you going when nothing else helps.  They need you.

                                   Dolly in her Liberace Coat


I read a scientific paper called Dispositional optimism and coping with Pain that discusses how your conviction about having control helps you to to deal with stressful experiences.  Here is a quote from it: 
"When analyzing the course of psychological processes of coping with pain, attention should be drawn to the factors which may support an individual in their efforts to reduce sensations or get control over stressful experiences. One of such factors is an individual's conviction about having control over what happens in life or about the ability to influence and change the course of events"
(bolding by me)

I found this paper when putting this post together, so here is the scientific basis to my conviction that control will help with chronic disease.  All the best to you in your own efforts