Getting Older With RA. Where's the Research?

When I was first diagnosed with rheumatoid arthritis I almost never saw anyone with RA. The few 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 available I joined support groups on Yahoo first, 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 used to see her rheumatologist 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 the 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, as liver and kidney function decrease. 

Clinical trials also very commonly exclude older people who may have co-morbidities 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.

It's notable that effectiveness research is done a lot less often than the high powered industry trials that show comparability of treatment effect for the purpose of getting new drugs approved.

Often effectiveness research, which might look at more difficult issues, is determined by the mandate and authority of the researcher, as well as where their interests lie. The individual researchers formulate research questions, but we seldom see patients involved in formulating research questions.

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 and healthcare progress.

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

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?”