Wednesday, 29 October 2014

Getting Older With RA. Where's the Research?

When I was first diagnosed with rheumatoid arthritis I almost never saw anyone with RA. Those I met were elderly ladies who were probably younger than I thought, and always thin and frail with deformed hands due to joint damage.

When internet access became easily available I joined support groups on Yahoo as a start, one of which I am still in. There have been men in the group but now we are all women from mid 40's to late 70's. As a group our RA seems to be getting more complicated than it was, while our doctors become less interested and more numerous.

Polly says her rheumatologist used to see her every 3 months, for at least 15 minutes and was a great deal more encouraging. Now he tells her she is looking well, considering. She feels like they're speed dating, based on the appointment length.

Julie says "It seems like researchers could make connections between having RA and some of my other health problems that have developed as I age (she's our star at 78).  After all, RA affects the internal organs and that could be the cause of some of the other issues.

At a recent conference I heard that research should inform health policy, but it seems to me there is an absence of research on long term RA in the present treatment climate. I worry about aging while taking drugs that were appropriate when I started to take them but may become more toxic with increasing age. 

It's also notable that effectiveness research is much more rare than the high powered industry trials that show comparability of treatment effect for the purpose of getting new drugs approved. Clinical trials also very commonly exclude older people who may have comorbidities or even solely because of age. This makes treatment data on elderly people with RA hard to find. 

Another issue to me is that ambitions in treatment of older RA patients are also reduced: if you are elderly with late onset RA, then "Achieving structural remission, functional remission and Low Disease Activity in clinical practice in elderly with late onset RA patients are realistic goals."  That's not the same goal used with young early onset patients.

Often effectiveness research is significantly determined by the mandate and authority of the researcher, as well as where their interests lie. The individual researchers formulate research questions, but getting funding and grants for their projects relies on outside approval. I don't think that altruism and the common good are the main criteria for research approval. In fact it often seems that the aim of many disease organizations which fund research is to raise funds and ensure their own existence, which might be endangered if the sources of their funds become unhappy with the directions they take. They could possibly slant their initiatives to areas where they think fundraising might be more fruitful.

We need to be clear and principled about research and we need to involve patients in deciding on research topics. Patients ultimately pay for the whole system and have almost no voice. There is some government involvement in making this a more common practice in the US and Canada, and there are some organizations like the Arthritis Research Center that go to a great deal of trouble to include patients but they are the exception.

Involving patients takes work from both sides: providers and patients. It is vital to include patients to help change priorities and improve quality of care.

Patients are necessary for culture change.

                                         A McKinnon
We don't want to wait as long as my friend in the picture.

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. "