Telehealth - Necessity or Convenience?

For 30 years I’ve had rheumatoid arthritis so I’ve had more experience with the health care system than I ever imagined when I was a teenager. In many ways I’ve been fortunate – Toronto is a large urban center with many doctors and we have a single payer health care system in Canada. There are places in the world where I’d be bankrupt by now because of the medications, operations and treatments I’ve needed. 

So far my personal experience of telehealth has been only in distance education. At St Michael’s Hospital Dr Rachel Shupak has a program called Rx For Education for inflammatory arthritis patients.  The  Ontario Telehealth Network (OTN) broadcasts the sessions to rural communities. At Baycrest Health Sciences recently I saw the same thing. Their classrooms broadcast educational materials often and easily through the OTN.

 

As a frequent patient I have often wished for a remote experience of healthcare but for me at it would be a convenience, not a necessity. It would have been a huge help to my father in law as he cared for my frail Mother in law as they both aged. How can you drop a frail elderly person at the door and then leave them there while you park?

Access to care is not the same everywhere even in Canada. My friend in Timmins is on a year long waiting list for mental health care. It would be great if there were a quicker solution.

My next mental picture of telehealth features my friend Camea May. She lives in the Appalachian mountains and recently sent me a picture of herself, standing beside a telehealth robot.  She had such a badly broken leg that a distant expert was consulted on her care.

Camea and her new friend

Before the Global Telehealth2015 conference I read about the use of telehealth in countries where doctors are scarce and care is basic, where there is trauma or PTSD, and where it is almost impossible to offer care to people with mental health issues. This is where you see the true value of telehealth,  – where the need is great and the medical resources are scarce. It can make a very large difference in countries with few medical resources.

A few months ago social media led me to an online talk at the UK/Ireland Cochrane Conference. A friend (Marie Ennis O'Connor @JBBC) directed me to her own presentation but I watched the speaker before her first. His name is Athula Sumathipala and he put the healthcare situation into a global perspective with one sentence:

He said " 89% of the annual global expenditure on health is spent on 16% of the world's population that bears 7% of the global disease burden". He calls it a sad reality and a bitter truth. As far as research dollars are concerned, only 10% of research dollars are spent on studying the developing world's health problems. This is called the 10/90 divide.

So when I say autoimmune arthritis does not get enough research dollars, I am not considering global realities. 

Ideas and concepts now spread at the speed of social media. Discussions are no longer confined to one geographic area. With webinars and livestream conferences we can learn about global issues from people like Athula Sumathipala and Vikram Patel, to name only two. With tweetchats I can have good friends in countries I will probably never see. Listening to them talk about issues in their countries makes me aware of the differences and difficulties in other parts of the world on a more personal level.

I hope that the connections we make through social media will help us address inequities and ethical issues, and that the novel solutions and ideas we learn will spread and lead to progress in health equity in other parts of the world.

This is more than just fairness - it is an ethical issue, and global capitalism makes this hard to change.

Real Hands, Real People

Thank to my friends for sharing stories about their hands.  I find it helpful to hear what others experience and know I am not alone.

Note: Bear in mind that some of the people speaking have had rheumatoid arthritis from before biologic drugs were discovered, and are dealing with joints that were damaged due to ineffective treatment.

Gail's Hands:

On my right hand the first knuckle is already deformed and some of the others are too but not as much as that first one, and that's a part of the recent increase in pain in my hands.  The little knuckle has been hurting while my finger is swaying even more.  Sometimes my fingers ache like crazy but that comes and goes.  Sometimes I have deep aching here and there and that comes and goes.

Ring splints

Allie:

I have the swaying of my right hand - Ulnar Drift.  I have a lot of swollen synovial tissue under the fingers on the knuckles - especially my right hand.  About a year ago - after remaining fairly stable for years - the middle knuckles on my fingers became permanently swollen and I can no longer wear my rings because I can't get them over the knuckles.  It was mainly my right hand that was affected.  But, later on - my left hand also is having changes and the middle finger on my left hand is swollen and painful.

The pain in my hands kind of comes and goes or maybe I have just become used to the pain. The night splints that the occupational therapist made for me helped a lot but after several years, I quit wearing them because I felt I didn't need them. Now, I think I probably need new splints made - especially for my right wrist.

Resting splints

Julie:

I really didn't realize how awful my hands looked until I saw a fairly recent photo of me with both of my hands in front of me.  My fingers look awful and my right wrist is all swollen.  My right wrist is so painful that I am having problems cooking.  Well - also standing on my lousy feet. I never had the sensation that the joints are moving and tugging.  I think everything on me went slowly and I just didn't notice.

I saw a hand surgeon early on in my trip with RA.  At that time, it was really my right index finger that was really bothersome.  He described the surgery he would do and said it would take 6 to 8 weeks for recovery.  Then, to this statement, he said "I will become your best friend".

I didn't like the sound of the surgery or the fact that he expected me to have many more hand surgeries - so I just passed on the entire thing.  Yes - my hand looks awful and at times is painful.

Angela:

I can't say I ever liked my hand surgeon. I respected his skill at surgery and put up with the rest. He's the one who put his hand up like a stop sign to keep me from asking questions, who told the students not to  worry if patients said that they had trouble with personal care because "they'll figure it out" (and this with a room full of Occupational Therapists beside him).

My friend saw the same doctor once and he told the woman on the other side of the curtain, "Fine, we'll go ahead and take care of your hand" then when she was gone he said to the resident - "It will never be better". She told him that she hoped he would not lie to her the same way.

Polly:

The hand surgeon I saw in 2004 wouldn’t even attempt to repair my hands because he said the surgery I would have to have is not perfected. He said as long as I can use my thumb and “pointer” finger left to use, that I would be fine unless I was in pain 24/7.  Well I am not in pain, but I can't use any of my other fingers. They’re in a fist now.

I don’t think he would have said that had it been his hands.   It's maddening how they pooh pooh it all. So he didn’t even suggest having the surgery way back then.  Now when I went to another hand surgeon this year he said it could be done but it might or might not make me more functional. It depended on whether you talked to the Dr face to face or read his clinical summary where he said it was not likely to help. I think the summary is called CYA.

I asked him also...both hands at the same time?  Yes, you’ll still be able to use a couple of your fingers...  I said you know I live alone?  have pets? That’s what rehab will help you with. We can get you  a home health aide, house cleaning help. I can't even turn on the ignition of my car without a special soldered key turner.  I walked out knowing he wasn’t really concerned about me. When I found out he told me one thing and wrote another, I knew I would live with these hands.

Loyal pet Dolly

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. 

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

The second presentation at the Conference was from Dr. Rookaya 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:
Burning
Foreign body sensation
Itching
Redness
Soreness
Dryness
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.

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

Histopathology:

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

Autoantibodies:

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.