Friday, 1 May 2015

Patients Included: A Charter for Conferences

The Patients Included Charter for Conferences has just been published today, May 1. This post describes some of my feelings about attending conferences as  a patient.

Before attending Medicine X at Stanford University in 2014 I had only been to one medical conference other than those put on by the Sjogrens Society of Canada of which I am a member. 

Once I returned home from MedX it seemed like a natural progression to be involved in and learning in a more public way. After years of support groups, blogs, Twitter and searching for knowledge every day, the MedX experience was a catalyst. Seeing so much enthusiasm for the patient voice and for change in healthcare made me feel that my thoughts and opinions were not fringe ideas any more; they resonated.

After MedX, last September there was a Patient Experience conference that I remembered from the year before - they were widely criticized through social media because there were no patients, either in the audience or as presenters, despite the name "Patient Experience." In 2014 they added a strong patient advocate to the program planning and invited patients to attend and to speak. No one in attendance complained about patients being there, and this year they seem to be following the #patientsincluded model.

The benefits of conferences as stated by a Healthcare Conference company : a chance to "engage in open honest discussion, networking with peers from across the country and leveraging knowledge from leading experts in this field"

The benefits and knowledge available at a conference can be put to good use by any of the team members involved in health care, including patients. In fact when the information learned is useful and novel, it gets shared at the speed of social media through tweets, blogs, chats and even in conversation.  As an example, less than  a week after the CADTH Workshop about Critical Appraisal in Saskatoon I passed the appraisal tools on to my partners in a PaCER research project and used it to inform my opinions in a Health Care Social Media Canada (#hcsmca) tweet chat. That's a speedy way to get it out of the silo.

I think there is no better way of mobilizing knowledge than to disseminate it widely. As Jack Andraka said at MedX we need knowledge democracy and to me that means more than just the facts - patients need lived experience with the healthcare spectrum in an atmosphere where they are people first and patients second.

More than meets the eye to patients

Last night I had dinner with a group of active patients and for interest I asked them for their job titles. This is what I got:

I am a patient  and have a PhD in Cellular Molecular Pathology.
I am a patient and a Speech Language Pathologist.
I am a patient and an IT Professional on the IBM Watson Health Team.
I am a patient with 20 years of experience in qualitative research.
I am a patient and a senior project manager in IT.

There is always more than meets the eye.

The impetus to have patients included in conferences has been part of the engaged patient movement for years, with Tom Ferguson laying the groundwork, with Lucien Engelen creating a logo to be used where patients are included, and now with Andrew Spong and an international group working together to create "A Charter For Conferences." It has been introduced on Friday May 1 and this blog fully supports the Charter.

To find links to more blog posts about the Charter watch #patientsincluded on Twitter.

Tuesday, 7 April 2015

Empower Yourself at the 9th Annual Sjogren's Conference!!

It's spring almost everywhere and time for the National Conference held by the Sjogren's Society of Canada.  "Empower Yourself" is the name of the conference. We'll be exploring current findings along with the "elephants in the room" to help you manage better. Presentations on new topics of Fatigue and Intimacy and Sexuality in Sjogren's will be discussed

Our Spring Crocuses are not up yet.

There is a great deal of evidence that suggests that patient knowledge, skill and confidence with managing chronic disease is a good indicator of better outcomes.

Lately I've seen Sjogren's Syndrome spelled many different ways: Sourjons, Soujgrens,Sjorgen's and Sojourns, all by different people who suspected this was a diagnosis that they would be adding to their other autoimmune disease(s). You can only imagine how difficult their searches for accurate information are going to be.

The upcoming National Sjogren's Conference will be a great way for both patients and health care professionals to learn more reliable facts. All you need to do to attend is register and come to the Delta London Armouries Hotel in London, Ontario on May 2. Health care professionals who attend are eligible for continuing education credits.

I am planning to take notes and post what I learn as I have in the past. Our conference has a distinctive special feature. For one hour the speakers and other volunteer heath professionals from Sjogren's related fields will host round table talks where attendees have a chance to ask personally relevant questions.  It's great to have that opportunity and also interesting to hear about the problems others face. Sometimes they match your problems.

Here's a quick overview of the speakers and their topics.

Dr. Arthur Bookman, the co-ordinator of the Multidisciplinary Sjogren's Clinic at Toronto Western Hospital and co-chair of the Sjogren's Canada Medical Advisory Board will start the program with "An Overview of Sjogren's Syndrome." He will tell us how it is diagnosed, the major manifestations and the impact it has on a patient's quality of life.

The next presentation is from Dr. Rookya Mather. She is the Associate Professor of Ophthalmology at the Ivey Eye Institute at Western University. Her topic is Understanding and Managing Dry Eye Disease and she'll be helping us to understand Dry Eye and how this affects those who live with it and have to manage it every day. Many of her patients have complex ocular surface problems.

We are excited to see Dr. Ava Wu at our conference for the first time ever. She is a Professor and researcher in the Department of Orofacial Services and has seen thousands of patients at the Sjogren's Clinic at the University of California, San Francisco where she is the Director.   Lately, she is also the co-author (with Dr. Troy E. Daniels, DDS, MS) of Chapter 16, "The Dry Mouth" in the newest "The Sjogren's Book" - Fourth Edition.  She sees patients as part of the International Sjogren's Syndrome Registry (International Collaborative Clinical Alliance (SICCA))

This year Dr. Arthur Bookman has added a new topic - "Fatigue and Sjogren's Syndrome"  This is one of the most disabling features of Sjogren's Syndrome" He will explore the possible causes, ways to minimize fatigue and promising new medications.

In comments made over the years members have indicated a wish to hear more about one of those topics that is usually kept in the closet. I have brought it up a few times but most Doctors seem to be uncomfortable with it and do not offer much advice. Since intimacy and all it implies is so crucial to maintaining relationships we will be happy to hear Iris Zink, a Rheumatology Nurse Practitioner and President Elect of the of the Rheumatology Nurses Society speak on the topic of "Intimacy, Sexuality and Sjogrens's Syndrome."

"What's New In Dry Eye Products?" This talk by C. Lisa Prokopich, OD, MSc, Optometrist and Head of the Ocular Health Clinic at the University of Waterloo School of Optometry and Vision Science will inform the audience of recent advances in pharmaceuticals and products to treat dry eye.

Glad to say my eye is never this red

After we hear from Dr. Prokopich the round table discussions occur. 

Our next speaker is Dr. Rami Abo-Shasha. His topic is "Corneal Neuralgia in Sjogren's Syndrome, A Brief Overview." I think we will all learn something new from Dr. Abo-Shasha. This is a problem that I was not previously aware of despite years with Sjogren's. It was also daunting to learn that this is not easily recognized by many doctors, so patients can spend a lot of time looking for a diagnosis.

Dryness of the mucous membranes is a hallmark of Sjogren's Syndrome

The final speaker of the day is Dr. Leslie Laing, "Saying "Treats" and Other Mouth-Watering Suggestions" who will discuss research findings on the oral aspects of Sjogren's including these areas: oroofacial altered sensation; the effects of the disorder on the quality of life; the outcome of usage of various oral moisturizers and non traditional products such as green tea, licorice root, xylitol,and virgin coconut oil. 

This is the 9th Annual Conference and is for patients and for health care professionals.  You can register at the Sjogren's Society of Canada website

Physician Accredited Conference

The Sjogren’s Society of Canada is pleased to announce that the 2015 National Conference is an Accredited Group Learning Activity (Section 1) as defined by the Maintenance of Certification program of The Royal College of Physicians and Surgeons of Canada.  This activity was approved by the Canadian Rheumatology Association.      7 M.O.C credits.


The conference is a CE for dentists, hygienists and healthcare professionals – PACE accredited, 7 CE credits.

Wednesday, 11 March 2015

Sjogren's Syndrome and TMJ Dysfunction: Bad Companions

This year I was finally able to see my chosen dental surgeon - one who specializes in oral and maxillofacial surgery. After 30 years of rheumatoid arthritis (RA) and hearing again and again over the years that if my jaw was sore I must be grinding my teeth, I found out the real truth - RA had severely damaged my TMJ (temporomandibular) joints. Since the damage happened over many years, the adjustments that my body made in response to the joint damage have left me with good function, even though a CT scan shows a much different picture.

It took a year to get the initial appointment and I expected to be on the surgeon's list for arthrosopic surgery for another year but, since the doctor was unexpectedly given more operating room time the process sped up and I had the procedure early in March. 

You might wonder what happens in this surgery. Basically the doctor uses a tiny camera inserted through an incision in front of the ear and just above the jaw to see the joint, and then uses small instruments inserted just above the camera to remove damaged cartilage, smooth rough surfaces, and clean the joint space - even to the extent of repositioning the disc if needed. 

You would have thought that a smart patient with Sjogren's Syndrome would have a clear idea of what is necessary for good self care when they headed to a hospital for jaw surgery. I thought I was well prepared but I was remembering other surgeries on my hands or feet - the extremities where a nerve block is the obvious way to control pain. 
I'm sure my eye was this red

Of course when the operation is on your face that strategy won't work, and the doctor is likely to want to make sure that you keep breathing regularly while he works. As a result the doctor started with a very effective decongestant which dried my whole sinus cavity very thoroughly.

I took a tiny sample of Oral Balance with me for dry mouth - it was a lifesaver, as was bargaining with the anesthetist to be able to use some Evoxac prior to the surgery. I was afraid that a breathing tube combined with a dry throat would feel dreadful.

Given the way I felt coming out of the anesthetic, I should have taken the whole medicine cabinet of over-the-counter products I normally use along with me for afterwards.

my usual eyedrops

My sinuses were so dry that I was desperate for saline spray to help the with headache and pain. Thank goodness for the Evoxac that helped my mouth and throat. Who expected the effect on my eyes to be so devastating? After I came out of the anesthetic I was unable to shut my right eye - the muscles on the right side of my face would not respond for hours after. That meant my eye was agonizingly dry, and I had no eye drops with me. 

Where was a saline spray when I needed it?

At least I had some dry mouth gel with me
So the moral of the story is - if you have Sjogren's and need to have an operation involving a general anesthetic, and the doctors express concerns for your airway - take the products you commonly use to the hospital with you so that once you are reunited with your belongings you can use them. The hospital was able to get eye drops, but not fast.

The first title I thought of for this blog post was "Don't Leave Home Without It" but it needs to be Them. I plan to restock my purse to be ready for anything. 

At the Arthritis Alliance Symposium one of the rheumatologists needed eyedrops suddenly. 
What did she do?
Asked a patient.
She had a vial in minutes.

Sunday, 1 March 2015

Insiders View of a Support Group

This post is composed of comments from members of a private support group I have been a member of since before Google was a search engine. It's valuable to have support, and it's great to be able to increase your social support network online. The hardest part is finding a group of people who are compatible.

Julie's comment
I found this Group by accident.  I was searching for something else and a little box came up on the right hand side of the page advertising the RA Yahoo Group.  I read a little about it and decided to join. I lingered around for awhile reading the messages and then started sending messages and questions.

I am not one to join any kind of support group, but this group was so interesting to me.  It was nice to find others that suffered with the same auto-immune disease and who really understood everything.  Each of you have contributed to my education of this disease and just listened to my whining - giving good advice.  Others think they understand this disease, but they really don't. The only people who really understand are people who also have an auto-immune disease.

Thanks to each of you who have contributed.  Everyone on this group is so very nice and I thoroughly enjoy knowing you online.  I just wish we could all meet one another in person.  This group is also a special place for me.  Thanks for letting me be a part of this group and thanks again to Penny and Annette for overseeing everything.  And - Thanks to all of the members for being so supportive - not only about RA - but, about everything.  
Penny, the group "owner"
I’m glad I invested in this group too, it’s such a special place for me and you all are like family. I do enjoy our time together each day so much and as you said I’ve also learned a huge amount. I guess there are many things that the doctors either don’t have the time to explain or many things that they simply have no idea about because they don’t live it. And to think when I first joined here, I really didn’t think I needed a support group. How wrong can you be?!  
I am happy you found this group too.  I have learned so much from you and always appreciate your sharing.  I think our group is unique.

I have to say I love this group a lot. I am not in any other group. Don't need to be as everyone here is just the best and I have learned a lot from this group.
I would be lost without all the support I get from everyone here. I class them as my second family 
I'm with you Maggie.   This is my only group as well.   Just feel like I'm always behind lately since shuffling kids more often

Our Doctors

My idea was to make a list of things that docs could share with their patients that we had to learn from each other, and/or things that would make our lives a little easier without having to go through trial and error.

We were talking about the things that we’ve learnt from being in this group, versus what our doctors have taught us. I said to Roze I wasn’t sure if the reason for the lack of info from the doctors was due to lack of time, or lack of living with RA themselves.

I think they know what the "words" mean but they don't know what the "experience" is.  For example, I don't think my pulmonologist (as good as he is) really appreciates what it is like for me to have the lung conditions and RA running around my body and the Fibromyalgia kicking in some pain here and some pain there. They seem to live out of their textbooks and we live out of our life's experience.

I discovered from all of you, for example, that I was not lazy.  In the beginning, because so many treat you like if you'd just do a little exercise you would be all well again, and you all taught me that my experience was real and you validated that.  I think validation is the best medicine. 

Me too Maggie and I’m not lazy either. I do have a group of girlfriends online, we all met in a chatting mums group when I first went online about 15 yrs ago, and many of us have now met in real life when we had a meet up in Dublin. We trust each other implicitly like a group of sisters and have seen each other through a myriad of trials and tribulations and through a ‘lot’ of laughs. They are like family and so is everyone in this group to me.

Like you I don't tell my husband half of the things I worry about. He has enough on his plate.
That’s a good valid point, sharing things here takes some of the burden off our partners I’m sure of that. 
That is a considerable benefit to not have to share with husbands when you can share with us.  Good point Julie


Well I have one idea right away Annette, and that was thanks to you. You mentioned the silver ring splint company to us, and that led onto me not only getting my own splints made, but in being referred to an OT, something my rheumy (not one of the ones I’ve had over the years), had ever mentioned despite me already having finger deformities. These things should be discussed early on in my opinion and not after the damage has already been done. Prevention is always better than cure

Silver ring splint from above and on my finger at left

Having support is a good thing... I knew I needed it and feel blessed I have all of you here... Even if I don't post as often as I should...

Monday, 2 February 2015

Third Annual Rheumatoid Awareness Day

February 2nd was Rheumatoid Awareness Day. You can find more about the history of this awareness campaign here at the Rheumatoid Patient Foundation.

Happy 3rd Birthday!

This symbol of the day - the groundhog and the tie-in to bringing rheumatoid disease out of the shadows seems particularly poignant.

From Rheumatoid Patient Foundation
Every day when I wake up in the morning it feels like Groundhog Day. I don't have the same bed and same clock the way Bill Murray did in the movie, but the same aches, pains, fatigue and deformities are there every morning when I wake up. Despite my carefully cultivated optimism and the best efforts of my doctors and myself at the best care, in my case rheumatoid Disease doesn't go away and doesn't give up. 

Compared to people who developed RD earlier in their lives, in particular the mothers of two friends, I am a glowing picture of  health. It's obviously true that treatments are better now. We used to see many people with permanent deformities and in wheelchairs in Rheumatologist's offices which are now full of patients who look quite healthy. The effects of RD are less visible, and rates of some types of joint surgery are decreasing.

In my volunteer work as a Patient Partner, which is a program in which trained patients teach medical students about musculoskeletal problems, the person I am most often partnered with is almost the same age as I am but with a later onset and more effective treatment it is more of a challenge to see her visible symptoms.

We need to increase awareness of Rheumatoid Disease and the effects on patients among the general population.

We also wish there were a campaign to educate family doctors to recognize RD faster. The opportunity to have it go into remission is a short period of time after it begins. They call that the window of opportunity. If even twice as many people could achieve remission the costs of RD would be much less.

The other area that needs attention is research funding.

To use statistics from the US as an example there are 50 million people with autoimmune disease and 11 million with cancer in the population.  Autoimmune disease is the poor cousin in this equation.  Cancer is estimated to be receiving $7,762 million this year (2013) compared to $872 million for autoimmune disorders.   

Autoimmune disease is blue. Research money shows on the right

 This chart compares cancer incidence and funding with autoimmune diseases. You can see how unbalanced this is. If we had even half as much money for research in autoimmune disease as there is  for cancer we could see huge strides forward for new and more effective treatments. Maybe the new drugs would even be affordable.

So today is the day to let more people know about Rheumatoid Disease. "Not your grandmother's arthritis!"

Here's a link to last year's Rheumatoid Disease Awareness Day post.