Kidney Week and RA

This blog starts with a patient story, just the way we are told that many hospital and heathcare meetings begin.

Julie has rheumatoid arthritis (RA) and knows about CKD (Chronic Kidney Disease) from experience.

"There are different levels of CKD depending on how well the kidneys work.  My Kidney disease is at Stage 2.  My kidneys work at 42% of what might be considered normal.  Most people's kidneys don't work as well when they age, but mine are worse.  

From etsy shop YourOrganGrinder. Buy yourself a kidney

I actually have no symptoms.  People don't usually have symptoms until the numbers get much lower.  I do have to keep my blood pressure under control and can not take several medications - like NSAID'S, Tylenol, biologics, etc.  The Vicodin that I take has a small amount of Tylenol, but my doctor said that was all right.  He sees many patients who have kidney problems from the NSAID'S - they have taken too many.  

A man who John worked with was taking Advil like candy for his osteoarthritis and went into kidney failure.  He had to go on dialysis for a period of time until they were able to get his kidneys working again.

My problems all started with a medication that I took - Vioxx  (a cox-2 NSAID).  It put me in to kidney dysfunction 6 weeks after I started it.  Vioxx is now off the market because mainly because it was affecting the Hearts of people that took it.  But - it affected my kidneys.  

After stopping the Vioxx, my kidneys returned to close to normal but apparently more kidney problems showed up later - you know how the inflammation of Rheumatoid Arthritis likes to attack internal organs.  My Internist sent me to a Nephrologist (Kidney doctor) and he has been checking my kidney levels ever since.  I have extensive renal tests every year.  So far, I have remained at a stable number."

I have had a draft of this story from Julie for a few months now but today seemed to be the perfect time to post it.

This morning the #HealthXPh tweet chat, run by doctors in the Philippines was about dialysis. You can see the blog here. This treatment for CKD is hard for anyone, with 3 dialysis sessions a week being ideal. Imagine how much more of a burden it is in a country where personal income is much lower.

A few hours after HealthXPh I saw Bernadette Keefe's (@nxtstop1 on Twitter) storify of events leading up to next week's nephrology conference celebrating Kidney Week November 3rd to 8th. 

If you're on Twitter the hashtag for the conference is #kidneywk. There are scary stories about kidneys out there - one is the urban legend about waking up in a bathtub of ice with your kidneys stolen. Kidneys are small but necessary.

Hats or Silos? You Be the Judge

The more involved I get in being active in the health area, the more "hats" I collect. When my chronic disease was my sole area of focus, my aims were clear. Now that part of my story has become the background to efforts to change the system. 

Research Role

There are opportunities now for patients to be involved in research funded by SPOR (Strategy for Patient Oriented Research), which was set up to help, enable and encourage patients to take this opportunity to add their unique viewpoints to medical research.

I'm on some research teams and doing my best to fit in, learn new skills and influence the projects through providing the patient point of view. I was asked to take an ethics course (TCPS-2) that is a requirement for researchers. It turned out to be useful that I had started the process to register with CIHR to be a volunteer board member. There's a lot to learn.

System/Quality Role

Another role is trying to become involved in decisions about the health care system. The belief that patients are the largest stakeholders in healthcare and should be involved in deliberations and decisions that affect healthcare is no longer unusual. This effort promises to be a long-term, with lots of interesting discussions about what defines "meaningful engagement." Market research techniques like surveys, focus groups and even one on one interviews with consultants make most of us think more about tokenism; not feel like partners.

Hospital/Community Role

We've seen patients on hospital Community Advisory Boards (CACs) or Patient and Family Advisory Committees (PFACs) in past years. What has changed is that now hospitals are required to have a patient and family committee or council - this means that all across Ontario there will be patient advisors involved in every hospital. This will give many more people a chance to learn and contribute with the hospital team. How much effect will this have on hospitals? We'll be watching.

Now that I am a member of a hospital CAC I am wondering how much can be accomplished in five 2 hour meetings a year?

Volunteer Role

In addition to those areas, many active patient or caregiver volunteers are working with our own disease groups to promote advances in care, working on changing the curriculum for medical students and doing the huge and often unappreciated job of family caregiver. They manage to do this despite the steep learning curve that is necessary for the care of themselves and their loved ones. As Seth Godin says, "When we confront a vocabulary that we don't understand, we can either demand that people dumb down their discourse (and fall behind) or we can learn the words."

Teacher/Student Role

The information we need to fulfill all of these roles takes a lot of work. It's scattered over the internet, given to us by other patients, and found in research. There's a problem with the research though - it looks more like patient engagement is developing as an "emerging area of expertise" (ie new silo).

Patient needs and system wants are not aligned. It would be useful if there were a course for patients, who are the only ones in the system who are (often) self educated and also volunteers. Patients could be helped with an educational pathway which would add to their professional skills and experiential knowledge and help them gain the knowledge to be part of a person-centered health care system. Then they could go beyond their personal experiences as patients or caregivers and help to improve the health system for everyone.

I'd like to see the conversation shift a little from talking about patient engagement and look at the other side - system engagement.

As a patient, being involved in all of these areas is like being able to enter numerous silos. Meetings take more energy because you need to think inside each different silo, even when the connections to other ones are obvious.  If we want to talk about overall issues for patients we'll need to start our own Whole Patient Movement or write letters to CIHR. 

All of these areas have their own goals: SPOR is funded to focus on including patients in research. Hospitals usually don't involve patients outside of their own institution and attached community and decision makers prefer to involve patients through surveys, focus groups and intermediaries such as consultants so that discussion stays in their pre-chosen framework.

At Health Quality Transform this year (2015) a separate stream was added to the long-planned program to encompass the patient advisor experience. This centered on people who are PFAC members and in a patient advisor role through hospitals. It was the only segment live streamed, which was welcome, but I was wishing to see more of the other presentations, that would enrich the whole person, not just one slice of the patient pie chart. 

Rather than seeing patients break down silos, patients are having to silo their knowledge and use appropriate pieces of it depending on the circumstances of their encounter. The patient has many silos within themselves and this just can't be healthy.

As any grain farmer knows, silos can be deadly. (thanks to Pat Rich for that insight)

The Whole Patient wears a more complex hat

Post on authentic patient voice here

Definitions and some news from the patient scene

ImpactBC was a registered Vancouver-based not-for-profit organization that provided coaching and collaboration with health care partners related to quality improvement, and public and patient engagement

When Deloitte has won the contract to provide this service, the volunteers were asked to volunteer through Deloitte. Outsourced engagement!! (Note: This contract was revoked when the patient volunteers rebelled)

Citizen engagement is the meaningful involvement of individual citizens in policy or program development. To put it simply, citizens are "engaged" when they play an active role in defining issues, considering solutions, and identifying resources or priorities for action. This "meaningful involvement" can take place at a variety of stages in the research, planning, or implementation phases of a project.

"citizen engagement is the meaningful, timely and appropriate involvement of individuals and potential support systems in policy development, program planning and implementation, research development, and health care decision making. In the context of health care, engagement can occur in the research setting, health are setting, and policy setting.Is it to inform/educate, gather information/views, discuss through a two-way dialogue; fully engage on complex issues; or partner in the implementation of solutions

Inform, consult or engage?

International Association for Public Participation (IAP2): “Public participation communicates to participants how their input affected the decision

Top Eight Everyday Problems with Arthritis

Julie is today's guest blogger with a list of things that have become difficult for her to do.

1.    Opening child-proof medication bottles

2.    Opening squeeze type bottles that you have to get               started by squeezing - like toilet cleaner

3.    Opening anything that is securely wrapped in heavy              plastic

4.    Pull-Tabs on canned products where they can not be            opened by a can opener at the top or bottom.

5.    Dragging the large garbage bags out front for the                 garbage men - John has to do this

6.    Carrying things while using my cane

7.    Lifting anything that is very heavy

8.    Dropping everything on the floor due to clumsy hands

Julie can only climb a few steps - not a entire staircase - thus I have the chair/stair lift as we are in a two-story house.  I have a container that I can set in my lap to carry things up and down while sitting in my chair.

She also purchased plastic glasses that are sturdy but easier to grip.

Here's her jar-opener that is attached under a cabinet that is a life-saver for her. It will open any size jar. 

Under Cabinet jar opener Her son and daughter-in-law gave her an electric jar opener, but it took up too much room on the kitchen counter. "I have a small stool with a cord attached to step on when getting in her SUV - John made it for me.  I first step on the lower stool and then can slide my butt into the car.  Then I pull the step stool up into the car by the cord. You wouldn't believe the people that see that and examine it so they can make one for themselves."

I have been making lists too. Here are my own top 9 difficult things of everyday life

1. opening round doorknobs

My whole medical building has these

2 turning a key in a lock

3. Cutting vegetables like little carrots in half

4. Using tiny sinks in hotel bathrooms

5. Carrying a cup of tea upstairs (or anywhere)

6. Releasing the car brake
7. Carrying things due to weight or weak hands

8. Making the bed
9. Opening water bottles

Julie and I have quite a few things in common. I feel like sawing the top off of the toilet cleaner.

Meat slicer

This would come in handy for lots of household items.

In fact I heard a story about researchers who were visiting elderly people and asking them about problems in getting the tops off of their medications. One lady who was 93 said she had no problems at all. They asked how she did it, and she took the researchers into her kitchen and proudly showed them her meat slicer.

"I just run them through this to get the tops off."

Three guesses why housecleaning items are not on our lists...

Do you have any trouble with things that most people do easily? Feel free to comment.