Tuesday, 14 October 2014

Chronic Diseases: More the Same Than Different

In September I wrote a guest post called "A Day In The Life" that appeared on HealthiVibe. Jeri Burtchell is doing a series of patient stories and has branched out to include chronic disease beyond her own. That's easier for me to understand now than it would have been a few years ago.

One thing I have noticed during tweet chats with patients is that people with ongoing health problems have a lot in common. Whether it is finding information, planning doctor visits, developing a website to help others, or just advocating for being included in decision making in healthcare, the disease doesn't matter as much as common issues about which we are passionate. Many topics that I instantly dismissed as not relevant to me have led to useful discussions and new friends.

In ovarian cancer, lung cancer, rare disease, diabetes or being a caregiver, I have found in all of these topics there are more similarities than differences. That may be part of the reason that the ePatients at Stanford Medicine X became a strong community so quickly, often greeting one another as if we were long lost friends rather than strangers.

Recently I came across a new issue that concerned me and where advocating passionately for myself in person had no effect on "the policy." When I was back in my natural habitat (in front of my computer) I realized the obvious - patients on social media are no longer alone. When I tweeted about my issue I found others across the country who felt the same and also agreed that we needed to work for change.  The issue is now an area of discussion with policy makers. We hope positive results will come from our meeting.

Including the patient voice in healthcare decision making can have impressive results, as I found out during the IDEO Design Challenge. Maybe it is time for a new sign.

Graphic by Lucien Engelen

Here are some links to Patients Included blog posts

One by Susannah Fox
And Leslie Kernisan

And I'll end with a quote from ePatient Dave speaking to a conference organizer: 

"I say this: want to know if you have Patients Included? Ask this: “Are there any actual sick people in the room?”

Tuesday, 16 September 2014

The IDEO Design Challenge

The Design Track for ePatients at the Stanford Medicine X Conference this year was an experience that demonstrated the value of teamwork. Where else could you see a cardiac surgeon, a researcher, GP doctors and a venture capitalist working with a patient to find answers to a health problem posed by a patient?

This is the way the challenge worked: two months before the MedX Conference the patients involved submitted problem statements to Dennis Boyle and his team at IDEO; participants got a shorter list back with requests for clarification and also received background links about design thinking and a copy  of the book Creative Confidence Unleashing the Creative Potential Within Us All.

To start our day at IDEO we had a tour. The company has done amazing work in design and their workplace is full of people doing work that they love. Then we broke up into teams and I presented my 'How Might We' problem statements. We had a terrific facilitator, Tanya Rinderknecht, who nudged us back on track when we started to get too ambitious.

In design thinking there is much consultation and questioning with the users of the potential solution. The statement the team chose to work on was "How might we convey new symptoms to Doctors and be believed. I find that when symptoms don't fit the mold, it's back to the same round of doctors for the same verdicts and no progress."

Through the intensive questioning, brainstorming, conceptualizing and prototyping the whole team kept on moving ahead and making steady progress. What we came up with as a solution is a patient toolbox. All five patients involved at IDEO presented what they learned  as well as describing their team's prototypes on the main stage at MedX.

I was lucky enough to have one of our 'Tools' to demonstrate. Here are the signs we made to communicate with  doctors in certain situations. (I  would want to have a good relationship with a doctor before I started to use these unexpectedly) Another use would be for doctors to adopt some of them and give them to patients for use in their appointments. With these signs health literacy is not an issue.

Here they are with some short explanations:

Studies show that patients are usually interrupted by the doctor within 11 to 18 seconds. This is a "Please don't interrupt me so soon"

Yes, I am interested in that treatment but what about side effects?

"But doctor I'm in pain. Can you help me?"

"Please slow down. I need to understand."

"Will this affect my sex life?" (a difficult topic for some doctors to raise)

Yes, I'll try this for now, but what about the future?"

"Doctor. You've got it. Thank you."

"Thumbs up on a great job." (Note: This can be turned upside down when appropriate)

You can feel free to copy these pictures for your own signs, or use them as the prototypes that they are. I've already had a suggestion for another sign: A picture of a brain and the words "I have a brain." Feel free to add more sign ideas in the comments.

Dennis Boyle of IDEO graciously gave the go ahead to post these signs. I will have more posts about IDEO. Our team produced three more tools and the conclusions I reached based on this experience were illuminating.

Monday, 4 August 2014

Medicine X is Close and has a Global Access Program

Alan Brewington (@abrewi13010), an ePatient Scholar, issued a suggestion to ePatients attending MedX this year. I took it as a challenge to write a post about the Who, What, Where, When and Why of Stanford Medicine X.

2013 MedX painting by Regina Holliday

In the What section it sounds as though Dr Larry Chu's brainchild conference with a capital C is well established as the most popular conference on Twitter, and Symplur has the graphs and charts to prove it. My favourite one of all shows the conversation between participants physically at MedX 2013 and then expands to show all of the links and connections all over the world. I also love to see video mapping of the way that conversations on Twitter spread through groups and individuals. If you look at this page you can see a time lapse video map of the conversation in 2012, and last year the number of tweets was up 170% from then.

The Who of MedX from my patient view includes many of the people I've been following, listening to, or conversing with on Twitter. Last year I watched as much of the livestream as I could, while I followed the conversation on Twitter at the same time. It was an immersive experience. Despite the obvious fact that I was not in California and was wearing "sitting around at home" casual clothes, I was exhausted after the three days ended and the real life participants flew home. I'm really excited to be attending in person as an ePatient delegate this year. 

Of course I'll be dressed

In addition to the people I think of as friends already there are experts from many areas of health care and innovation. Last year Jack Andraka was so quotable. This year the presenters include keynote speakers such as Daniel Siegel, MD, clinical professor of psychiatry at UCLA and author of The New York Times bestseller Brainstorm: The Power and Purpose of the Teenage Brain and panel discussions like those about emerging technologies in mental health led by Malay Gandhi, chief operating officer of Rock Health, a business accelerator for start-up companies in health-care technology.

What is MedX? To a patient advocate it is far more than a great place to connect with others who share your point of view (at least some of it). It's a place where you're exposed to startling new ideas, meet some of the people you "see" every week (virtually), and where you form bonds that last well after the conference is over.

On the plus side though, even at home you can get a lot of that feeling through watching and tweeting. There are many reasons that being there in person is not possible for ePatients and this year Medicine X has a new feature. There is a special Global Access Program available internationally to ePatients, academic scholars and students so that they can participate virtually in addition to watching on the web. To use this interactive access you can register here for the conference on September 5th to 7th. With this you can see the main stage speakers.

Feel free to spread the word about this to others in your own community. It sounds as though Medicine X is using design thinking. Using the question "How might we....? as a starting point they have found a way to include many more people in the conference.

The schedule is full of events I don't want to miss and people I can't wait to see, so whether it is virtual or in-person I hope to see you there. 

Word Bubble from Medicine X 2013

Last year the Medicine X was a revelation of patient inclusion. The conferences I have been to or seen advertised since then are notable for excluding patients through high admission, tokenism, or stating "We're all patients" even when they use terms like patient-centric or patient engagement in the conference designation. Here's a quote from an ePatient Scholar

“Medicine X is all about people working together toward changing health care for the better, and everyone is welcome,” said e-patient Hugo Campos. “Patients are on an equal footing with all other participants, and that’s fundamental for fostering true partnership toward change.”
The “X” in Medicine X is meant to evoke a move beyond numbers and trends—it represents the infinite possibilities for current and future information technologies to improve health. For the Global Access program X also represents what it costs to tune in to the live stream. X is the value virtual attendees get from the experience. X is what it’s worth to be included. X is up to you.

"Stanford Medicine X is a catalyst for new ideas, designed to explore social media and information technology’s power to advance medical practices, improve health, and empower patients to participate in their own care. "

With Medicine X less than a month away and a visit from grandchildren you may notice a summer hiatus here at Rheutired blog.

Tuesday, 22 July 2014

Validation and Online Communities

I have read many blog posts and consistently hear stories about patients who are not believed when they report symptoms. From doctors to family to strangers, people with an invisible illness hear comments like "It couldn't possibly be that bad" and "Why are you using your mother's handicapped placard?"

For a sample of comments by doctors look at the end of this blogpost by Kelly Young of @RAWarrior. These comments made by doctors at the conference are not likely to be surprising to patients with inflammatory arthritis, but if we have not experienced this we have heard reports from other patients.

Just this weekend a friend said she wanted to see a blog post about the type of experience she had during a appointment during the week. Her main symptom was a serious and recent lack of energy. After she described her symptoms the doctor said "Joanne, you've had inflammatory arthritis for 30 years. Your body is getting tired of fighting." Knowing her own body as well as she does that response was not good enough but what can she do?

Tough as it is to get good treatment from doctors who don't believe you, imagine your family and friends echoing those sentiments. Here are some quotes from online friends...

"People don't think that you have a chronic, painful, fatiguing disease if you don't look too bad and they expect too much from you.  Even my own family wants me to be like "before" though they all know what I have been through in the preceding years. Their "forgetting" is selective depending on what they want from me even though everyone is thoughtful and protective of me most of the time."  Julie

"One of the teachers - I used to help out in her class, voluntarily I might add. When I had occasions that I just couldn't stay on to help after work, I got the impression that she didn't quite believe that I was as bad as I said I was. She would often use the phrase, you’ll get better one day."  Sue

You're looking good today

"“You look so good, so young!” Oh how I wish I felt that way!!!!! No, people don’t understand. They don’t understand how when I hurt that it drains me and I just can’t do it all any more and have any energy left after. I’m going to vacuum today and that will pretty much drain me. If I go somewhere, that is all I do. No housework on those days. " Jeanie

"People come up to me and say "oh you're looking really well " and I actually feel like c**" Pam

Some weeks it sounds as though almost everyone with an invisible illness and a disabled  parking permit has been a subject of comments and nasty notes.

Nanaimo disabled parking decal

All of this takes a real toll on patients. There's a term for it too - Invalidation.  In fact "In patients with rheumatic diseases, invalidation has been shown to relate to worse physical and mental health and more pain." as seen in this recent study from the Eular 2014 abstracts.

The paper starts off with this statement  "The term invalidation refers to the patients’ perception that their medical condition is not recognized by the social environment. It includes non-acceptance, misunderstanding, disbelief, rejection, stigmatization and suspicion that the problem is exaggerated or purely psychological."

Here's another paper. This one assesses patient's perceptions of responses from others in an attempt to develop a measurement scale.
"The Illness Invalidation Inventory (3*I) assesses patients' perception of responses of others that are perceived as denying, lecturing, not supporting and not acknowledging the condition of the patient. It includes two factors: 'discounting' and 'lack of understanding'."

More awareness and more respect for patient reported outcomes will help on the medical side of things. Collaborative medicine may also make a difference as Drs try to engage patients in the decision making process.

It helps patients to find sources of online support. In one support group I know well members agree that it is a good way to talk about problems and fears for now and in the future without worrying the people closest to them. In these groups there is usually very little skepticism from other patients. That experience of acceptance and support, along with practical ideas can help to counteract invalidation in other areas.

OHCs (Online Health Communities) help to facilitate communication among professionals and patients and support coordination of care across traditional echelons, which does not happen spontaneously in busy practice. "

Friday, 11 July 2014

Taking Control Part 7: Dr Sherise Ali: Brain Fog

Brain Fog in Sjogren's Syndrome is a topic that quickly found an audience at the National Sjogren's Conference in Canada this year. This topic was addressed by Dr Sherise Ali this year. She is a neuropsychiatrist and has recently written a chapter on psychiatric care of the rheumatologic patient for the Harvard Medical School and Massachusetts General Hospital textbook of Psychiatry of the Medically Ill.

Brain fog is defined as "a generalized dysfunction of concentration, short-term memory and cognitive speed which is disruptive to the patient's lifestyle and not attributable to another cause."  There is no specific pattern and there can be ripple effects in your life. Compared to traumatic brain injury brain fog is mild. Your IQ is not decreased but you may need to find alternate routes to get to the same endpoint.

It is disruptive to the way you feel about yourself when your cognitive speed is slower that it used to be but Dr Ali said it should have no dramatic effect on your function.

Brain Fog by Annette McKinnon

Pain also has a deleterious effect on brain fatigue. So far brain fog is not consistently found to be associated with Anti-Ro or Anti-La antibodies and no one antibody has been isolated that is consistently associated with or specific for CNS (Central Nervous System) symptoms.

In 50% of patients who undergo an MRI for diagnosis the findings are normal, showing the limited role of MRI in this diagnosis. The most effective way to diagnose brain fog is neuropsychological testing. Dr Ali said that this symptom has an insidious onset, is non-progressive, not necessarily associated with severity of illness and can occur at any time. 

Brain fog is becoming more and more recognized as a symptom of CNS involvement in Sjogren's Syndrome. The most likely mechanism is inflammation of the cerebral vasculature. 

Dr. Sherise Ali speaking at the National Sjogren's Conference

Taking control of this symptom is not easy, but it is very possible. Dr Ali gave us these conclusions as well as some strategies to support our brains.

  • Play an active role in your medical management - inform your   doctor of OTC or herbal remedies and take your agreed on    medications.
  • Talk to your doctor and ensure there is no other medical cause
  • Use behavioural strategies to circumvent cognitive issues
  • Keep socially, physically and mentally active
  • Practice good sleep and dietary habits
  • Prevent, recognize and manage clinical Depression and Anxiety
  • Use adaptive coping mechanisms
  • Minimize stress, anxiety
  • Seek positive relationships
  • Join a support group
  • Seek counselling for complicated emotions
  • Seek treatment for suspected depression and other psychiatric conditions
  • Allow yourself to feel sad sometimes, it is a normal emotion


Learn a new language
Brain training, games, puzzles
Physical activity (to increase blood flow to the brain)
Pace yourself
Engage in creative activity
Good sleep is important. Can try a pre-bed ritual.
Seek positive relationships
Manage negative emotions
Identify your stressors and work on them
Seek treatment/professional help and/or a counsellor
Deep breathing and progressive muscle relaxation can help
Acceptance as a method of easing frustration was suggested. 

Watchwords from Dr. Ali :

"Use it or lose it."
"You don't want to lose synapses."

Advice on circumventing cognitive issues with behavioural strategies:

Make lists of things you want to do each day. Jot things down as they occur to you.
Keep pencil and paper handy near the phone.
Take notes at work, especially if you are learning a new task - take notes on all steps involved.