Wednesday, 29 July 2015

What is Cochrane and Why Am I Blogging About It?

The Cochrane Collaboration is an independent, non-profit and non-governmental organization. They have 31,000 volunteers around the world working on organizing medical research information in a systematic way so that patients, policy makers, professionals and others can easily make logical choices about health and healthcare based on the evidence.

Cochrane Canada’s funding runs out in September 2015 and will not be renewed by our government through the Canadian Institutes of Health Research (CIHR). In 2013 CIHR awarded Cochrane Canada the prestigious CIHR Knowledge Translation Award, for “Leadership in promoting evidence-based health care”.

Even in their letter of funding termination, CIHR refers to Cochrane as a “vibrant organization, internationally-recognized for its excellence, and committed to engaging patients in its important work;” and they note the value of their “knowledge translation activities and the quality of [the] synthesis products.

    Cochrane produces systematic review which are used by everyone - from consumers to scientists to policy makers, because they sum up the research evidence on a specific question about the effectiveness of a healthcare treatment or test. 

Since 2005 Cochrane Canada has been funded primarily by the Canadian Institutes of Health Research (CIHR) ($9.6 million over five years) and the Ontario Ministry of Health and Long-Term Care ($1.25 million).  

As you see Ontario has had a part to play in funding Cochrane, and in view of the fact that Cochrane Canada has trained almost 3,000 people in Canada to do systematic reviews, and
has held 181 knowledge translation workshops & presentations, they are a mostly untapped resource to help facilitate the transformation of consumers to engaged patients.

Ontario Health Minister Eric Hoskins made this point in his "Patients First: Action Plan for Healthcare" in February this year: 

"Inform: Support people and patients – providing the education, information and transparency they need to make the right decisions about their health."

What better support for patients (the blockbuster drug of this century) than Cochrane reviews and workshops which are part of the foundation of evidence based medicine?

I am hoping that as part of the effort to keep Cochrane Canada here the Provincial Governments would help with funding. Hopefully after the next election we can look for all-party collaboration federally to keep this valuable resource in our country. 

Decision making is getting more and more complicated - we need all the help we can get to make better sense out of it, so it would be a sad loss to the international community of support and to Canada if our country no longer supported Cochrane.

If everyone wrote to their provincial and federal representatives and candidates that would help to get funding for Cochrane back on the radar.

We could also tweet and email our provincial Ministers of Health, and start talking to all of our candidates running in the upcoming federal election. 

Friday, 24 July 2015

Empower Yourself: 9th Annual Sjogren's Society of Canada. Dr Rookya Mather

The second presentation at the Conference was from Dr. Rookya Mather. She is Associate Professor of Ophthalmology at the Ivey Eye Institute at the University of Western Ontario, specializing in Cornea and External Eye Disease, and a long time member of the Medical Advisory Board of the Sjogren's Society of Canada. 

She spoke about Understanding and Managing Dry Eye Disease, and how it affects those who live with it every day. Dry Eye Disease (DED) is the most common reason for people over the age of 40 to visit an eye care professional and may be associated with morbidity and reduced quality of life.  It is generally underdiagnosed and undertreated.

It is also a clinical challenge for the eye care professional since it is time-consuming to diagnose and manage, it is usually not curable so the patient is frustrated, there are numerous causes and exacerbating factors and the patient reported symptoms do not always correspond to the clinical signs.

Here are the symptoms of dry eye:
Foreign body sensation
Gritty or sandy sensation
Light sensitivity
Sticky or crusted lashes
Fluctuating or transient blurred vision

Dr Mather laid out the steps we need to take to be more comfortable, despite having dry eyes:

1. Tear Supplementation
2. Control of Inflammation using topical corticosteroids or systemic          immunosuppressants
3. Reduce loss of moisture through evaporation by modifying environment and   behaviour
4. Support meibomian gland function
5. Nutritional support
6. Enhance tear production: Salagen, Restasis

Dr Mather gave us advice on how to accomplish these goals, and also sympathized about the costs of the products we need. If a product has no DIN (drug identification number issued by Health Canada) it is not covered by any type of insurance. 

She cautioned us to think about blinking: Remind yourself to blink more often and try blinking up to 3 times in a row. Also, read differently. Use artificial tears before you sit down to read or use your computer.

Try to stay ahead of the dryness to make your quality of life better. You need to intervene before your eyes are in jeopardy - it's possible not to feel the effects of dryness. With uncontrolled inflammation you can develop corneal perforation.

One piece of advice for people with meibomian gland dysfunction was to use hot soaks and then wash the eye area with Spectrogel or Cetaphil.

People over 65 are more likely to report having dry eye. Since this is an inflammatory disease there is no easy cure. Anything in front of the eyes is going to help to reduce airflow across the eye surface so try to avoid airflow, especially when it is hot and dry. 

You can find a wide variety of eye protection from moisture chamber glasses to Panoptx which is wraparound eyewear  and other alternatives. Fortunately regular drugstore wraparound sunglasses which fit over my prescription glasses are enough for me so far.

Moisture chamber glasses to reduce evaporation

Sometimes you need to work on your problems related to Sjogren's Syndrome a few steps at a time. Dr Mather suggested we take our top 3 problems to the doctor each time we have a visit and work on gradually improving our situation, step by step.

You need to own your condition, so that you know how to help yourself. With a chronic disease like Sjogren's, education is particularly important to empower yourself and protect your eyes. That is one of the reasons I love to attend conferences - to learn more from experts and also from other patients I meet there.

Sunday, 5 July 2015

Empower Yourself: 9th Annual Sjogren's Conference. Overview by Dr Bookman

The 9th Annual National Conference of the Sjogren's Society of Canada was held on May 2 at the Delta Armouries Hotel in London, Ontario.  The theme this year was "Empower Yourself" By exploring current findings in Sjogren's Syndrome, along with the "elephants in the room" patients should be able to manage their symptoms better.  

There is now a great deal of evidence that suggests that patient knowledge, skill and confidence with managing chronic disease helps us to have better outcomes. We must pilot our own planes because we're the only ones dealing with our Sjogren's full time. Health care professionals only check in to help us a few hours a year. That's another reason that learning more and talking to peers at the conference is such a benefit.

Plane model of Self-management - you're the pilot

As in the past, Health care professionals who attended were eligible for continuing education credits.

After an introduction by President and Founder Lee Durdon, 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 opened up the program with "An Overview of Sjogren's Syndrome." He told us how Sjogren's is diagnosed, the major manifestations and the impact it has on a patient's quality of life, as well as some new knowledge he has learned through studying Sjogren's patients.

There's a lot that goes into diagnosing Sjogren's Syndrome. These are the American-European Consensus Criteria.

Ocular symptoms:
1. Have you had daily persistent dry eye for more than 3 months?
2. Do you have a recurrent sensation of sand or gravel in the eye?
3. Do you use tear substitutes more than 3x per day?

Oral Symptoms:
1. Have you had a feeling of dry mouth for more than 3 months?
2. Have you had recurrently or persistently swollen salivary glands as an adult?
3. Do you frequently drink liquids to aid in swallowing dry food (the cracker sign)?

Ocular Signs:
1. Schirmer's test
2. Rose bengal score or other dry eye score

Salivary gland biopsy

Salivary gland involvement: At least 1 is positive.
1. Unstimulated whole salivary flow (1.5 ml in 15 minutes)
2. Parotid sialography
3 Salivary scintigraphy

Blood test for antibodies to Ro(SSA) or La(SSB)

As you see some of these are questions asked of the patient (subjective) and some are determined by testing (objective) so there are two elements to the diagnosis. You need to have 4 of the 6 criteria or else an abnormal biopsy for a diagnosis.

For the unstimulated salivary flow the patients spends 15 minutes spitting into a flask. 2 to 4 cc is normal. With Sjogren's it's usually only 1 1/2 cc.

Many patients are less than happy with Doctors  because it usually takes at least 3 years and as many as 3 doctors before getting a diagnosis of Sjogren's. Dryness of the mucous membranes is a hallmark of Sjogren's Syndrome - that takes in all of them, even beyond mouth and eyes, to include ears, nose and vaginal tissues.

Fortunately Dr Bookman had encouraging news about the possibilities of Rituxan and other new research.

He also reminded us that a first order of advocacy would be to work on both insurance companies and on the government for a more favourable treatment of damage to the teeth caused by Sjogren's Syndrome. 

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.