A Day In The Life. RA Support Group Edition Day 1

I crowd sourced some of my day in the life. Support groups are wonderful.

Polly has ideas  for a demo film:

"Someone needs to make the virtual reality rheumatoid arthritis experience - I've been wanting to do that for years.  A day in the life..from the lowest pain to highest and then add some gastro issues just for a few chuckles.."

Jill feels that her doctor does not appreciate the impact of RA: 

"I don’t think our doctors have any idea of the impact on our quality of life. We see them for such a short amount of time throughout the year and then it’s only enough time to deal with the immediate issues/concerns. I bet if we each sat down with our rheumy and talked them through a week of our lives they’d soon see things in a different light." 

Julie and John:

"We look like we are feeding monkeys when we go to the store because we buy so much fresh fruit and vegetables.  We have at least one serving of a fruit or vegetable and usually more with every meal.  I really don't think we surpass seven servings a day though.

I have read that 65 to 75 is "Young" old,  75 to 85 is "Old" and 85 plus years is "Very" old."

Polly is single now:

"I feel invisible a lot of the time.  I think you don’t get much attention if you're solo."

Rosie wants a place to relax.

"Sometimes I sat in the pavilion and knitted.  I haven't found a body of water to visit but I am going to try and find one so there will be a place I can go by myself where I don't have to worry about catching anything from anyone!"

Julie has a soft spot for animals

"We were feeding a awful-looking very young raccoon that we felt sorry for.  He looked so sickly and after several days fell over in the yard.  John picked him up in a towel and put him in a box and then called animal control.  They came out and took the poor little raccoon and the officer told us that distemper was rampant in raccoon's in the area.  We both shed a tear over that sick raccoon. Thankfully, our pets are vaccinated against distemper, but the feral cats we feed aren't vaccinated against anything and now we are worried about them.  Always something to worry about."

I don't have a soft spot for all animals

At our house we are fighting the groundhog wars. The hole is blocked off now. We might have left him alone but he wanted to live right near the back door, next to the foundation.

Just sitting here I see reminders of RA in front of me, on my desktop, splints in the nightstand.

Pills under the monitor

Jills ring splints picture on my desktop

Adapted pens always near me

Resting splint worn nightly

Right angled knife - so easy for chopping

Empower Yourself: 9th Annual Sjogren's Society of Canada Conference: Dr Ava Wu, Part 3

We were excited to see Dr. Ava Wu at our conference for the first time. She is a Professor and Researcher in the Department of Orofacial Services and has seen thousands of patients at the Sjogren's Clinic at the University of California, San Francisco where she is the Director. Dr. Wu is also the co-author (with Dr. Troy E. Daniels, DDS, MS) of Chapter 16, "The Dry Mouth" in the newest "The Sjogren's Book" - Fourth Edition.  She sees patients as part of the International Sjogren's Syndrome Registry (International Collaborative Clinical Alliance (SICCA))

Dr. Ava Wu, DDS

She demonstrated very graphically how little saliva is produced by a patient with Primary Sjogren's Syndrome. 

Dry mouth is more common in women than in men. This is the definition Dr. Wu used:  

"the sensation of oral dryness begins when unstimulated salivary flow decreases from 40-50% of the baseline flow rate." Dawes, Journal of Dental Research

Some of her suggestions were new to me, like adding flavoured oils such as mango, peppermint or lime flavoured olive oil, or omega 3 or flaxseed oil to drinking water to ease the dryness. That fits in with advice from my dental hygienist to swish a little olive oil around in my mouth when it is uncomfortably dry. I'm always happy to gain a new strategy. 

She stressed keeping gums healthy, and suggested onlays rather than crowns because less of the tooth is removed. It's more conservative dental care.
Dr Wu also suggested using a warm water baking soda and salt water rinse if you have discomfort in your oral cavity. 

Here's a picture showing the difference between an onlay and a crown:

She mentioned a prescription product called NeutraSal that comes in a powder form and is dissolved in normal tap water. It is a supersaturated calcium phosphate rinse that may be helpful for discomfort relief as well. 

I followed her suggestions for fluoride varnish for your teeth once a year at the dentist, and a mouth guard at night. If you use Prevident you should not rinse after you spit it out. Using MI Paste as a remineralizing agent is also recommended - That was good news because I currently use it on my teeth under my night guard.

Dr Wu has also made a video that gives surgeons tips on doing a salivary gland biopsy.

To increase the pH in your mouth you can use a bicarbonate mouth rinse. I'm sorry I could not write fast enough to get Dr. Wu's instructions. This type of rinse would be good to use after you eat acidic food.

Looking Forward to MedX

Last year I was an ePatient Delegate to MedX; once it was over I was able to call myself an ePatient Scholar. 

Being there was an experience that changed me. Even though I made some super-klutzy moves that I will keep to myself, I have no regrets. Meeting so many Twitter friends and powerful patients who speak my language was an irresistible draw.

This year I won't be there, so you might ask, why am I looking forward to MedX? 

I'll be trying to watch on the livestream, but on Saturday I'll be at an all-day session of a Citizen Advisory Group, and on Sunday will be in a participatory meeting ensuring that elderly Canadians and their caregivers will have their voices heard.

Events like these were not on my calendar prior to Medicine X. It changed the way I look at the health care system and the role of patients in it. It also affected my confidence in the ability of patients, (including myself) to be involved in decisions about health care.

MedX is more than just a three day experience for the patients who attend - they all have work to do to prepare themselves. Giving an Ignite talk is more than just standing up and talking for five minutes. The presenters work on the Ignite talk all summer - they consult, prepare and practice.

The IDEO Design Challenge showed a different way to learn and think - reading books on Design Thinking, watching videos, and preparing the ideas - the "How might we..." statements that the prototypes are based on.

The ePatients on the production track work hard too - blogging, tweeting and publicizing the event before, during and after the conference. In addition there were other team building projects so that by the time  ePatient Delegates arrive at MedX they feel like part of a team.

You might wonder how this connects to looking forward to this year's MedX for me when I will miss so much of it?

The reason is that this process, the work that the ePatients do means that when the candidates arrive at Medicine X they are prepared - equipped for the conference, enthusiastic and ready to be changed.

Seeding like a dandelion (Sydney, Australia)

And that's what I look forward. Seeing more patient advocates develop larger profiles as coming year unfolds, seeing the connections they make help their work grow and spread, seeing more people who are empowered and confident of their abilities to change the way things work in healthcare. They're also ready to inspire others, to encourage them to go to MedX next year and create more change.

ePatients don't always just pop up out of nowhere - they need a little sunshine to grow, and that's what MedX is good at, so good luck and have fun to all of the new ePatient Delegates!

Connections. MedX 2012 from @symplur. 

The Authentic Patient Voice

The language of patient engagement is starting to concern me. On Twitter #PatientsIncluded is the only patient hashtag that has not been taken and 'professionalized' by hospitals and institutions as their own. 

Patient Experience, Patient Engagement, Patient Relations - all those terms have been turned into hospital silos of professionalism. If you want to call yourself a Patient Navigator you'd better think again. You might be confused with hospital or health system navigators. How about Patient Advocate? - Nope, it's taken. (see below)

"The Department of Patient Advocacy is made up of professionals from various health care backgrounds who possess a wide range of skills and expertise." from a hospital website

"If you are in an Ontario public hospital, you will have access to an in-hospital Patient Advocate through the Patient Relations Department."

If you are a patient then, one who is active and engaged, you don't actually have any term that you can apply to yourself which has not been appropriated. How can patients form a culture when every new term they apply to themselves is quickly co-opted?

There are books to help these professionals too, for example...

A Patient-Centered Approach to Handling Complaints and Grievances... to assist Patient Advocates in managing grievances and complaints more effectively in their organizations.

And courses

"Recognize and understand the key concepts for gathering and using patient experience to design health care improvements"

Keep the term "using patient experience" in mind.

Just last week I saw mid stream results from a project I was involved in. Patients and caregivers did in depth phone interviews including creative pictures to make points about the good and bad in a healthcare issue. A few weeks later the consulting company invited 'selected interviewees' to come in for the final two hours of what had been a day long work group. The consultants, along with their clients, had taken the consultant-chosen ideas and insights and made them into prototypes of solutions. The people who arrived late in the day saw the proposed ideas and were asked for input which the presenters tried to include in presentations immediately after.

As we left we were told that we would see these new initiatives in October, and we would likely recognize our input. It was unsatisfying that they used our ideas to create their version of the patient/caregiver experience, and will be able say "Of course we had patient/caregiver input."

This is not an isolated issue. In a Tweetchat my comment that I am a "third cousin twice removed" of the healthcare system got a large response. It's funny, but the truth in it was what made people laugh.

With PaCER patients are fully engaged in all stages of research

Despite my complaints there are exceptions where there is enthusiasm for the patient movement and the authentic patient voice - The PaCER course in Calgary, which now has a satellite in Ontario is one of those, and I couldn't have asked for more enthusiasm than I received when I contacted the Ontario SPOR Support Unit. 

What I am ranting about is the way in which patients are being streamed into advisory sub committees, the way we are being used as tokens and to help tick off the right box, and the way that the large "disease organizations" have corporatized our voices.

Where is the attitude that patients are part of the team in healthcare, that we are partners? Why are we always asked to participate inside a pre-determined frame?
When will we see co-design of new policies, and ultimately co-production?

Could this be connected to the embarrassing fact that patients can work as hard as anyone else in the health professions, and yet they are the only ones at the table with no badge, and who are not being rewarded for their efforts? Some are quite willing to volunteer indefinitely, and enjoy the process, and yet they still have to make their own way to learn what they need to know.

There are no development courses for patients who want to be active influencers. There are few conferences where they can make connections and learn about up-to-date research, not to mention the lack of access to medical journals that are behind paywalls. The whole health infrastructure is supported by patients as the major stakeholders and yet it is difficult for us to access enough information to fully participate.

We need to support the journey from passive patient to patient leader. 

Engaged Patients: What Good Are They?

It's important for the voice of the patient to be included at all levels of health care. Ultimately the money for the health system, including hospitals, pharma and insurance companies comes from patients. But we can't all just jump in and say we want to sit on boards and committees when we know very little about the issues that will be discussed.

Everyone knows that feeling of saying the wrong thing and losing credibility in the blink of an eye. As patients we may become experts on our own or a family member's disease, but that does not automatically give us insight into the way the system works and how it all fits together. That's one reason that patients need support and information to help with learning what they need to know to participate.

With the meaningful inclusion of patients as members of teams making decisions about healthcare the system will improve. Here's a quote from the Canadian Foundation For Healthcare Improvement. (CFHI) 

 ..."co-designing improvements with patients and families leads to new insights and better results than providers and leaders working on their own.

There is recognition of this fact in the efforts we see governments making to include patients on research teams, on advisory board work groups and on hospital advisory committees. Notable government funded groups are SPOR in Canada, PCORI in the US, and Invo in the UK, all hoping to see patient involvement as "The Blockbuster Drug of the Century."

Imagine how powerful a force a blockbuster like the engaged patient could be for governments that are trying to lower health care costs. That might be what is behind SPOR and PCORI.

The question on everyone's mind now is how do we find or produce these blockbuster engaged patients; how do we inspire more patients to take this amount of interest in their health, in research and in the health care system? 

I can tell you from experience that is not easy to go from being a naive and trusting patient who assumes the doctor knows best, to being well educated about my own health issues and being able to discuss my own health and the health system confidently. It's a lot of work, but of course, it's your life hanging in the balance, so you do it.

In Canada I have heard that routes to engagement for patients are being discussed. There's a lot of interest in what works and what doesn't. It's unfortunate they can't just hatch us. 

When I was first diagnosed I had two children, major fatigue and pain, and no time to try going through journals in the Central Library. Now it's easy to access much of the same information as your doctor sees just by searching on your computer. The major issue is choosing trusted sources of information. One thing to remember is that any site with something for sale is not unbiased.

Starting with government health sites, hospitals and disease charities is usually a good way to start to learn more. Another way to learn and gain confidence is through conferences and online webinars where you can get accustomed to hearing the language.

Our health care system could do a lot more to improve health literacy. In my wilder dreams I imagine courses that people can access in many different ways, depending on their language and literacy levels. You'd start with multiple choice, a lot like the game "Free Rice". The level of difficulty would keep increasing as you learned more.

      Not free rice

With the ability to make complex information into a game I am sure that with a concerted effort we could have the basics of anatomy and health terminology online fairly fast. Med students already have the bare bones of learning systems so we are not going to have to start from scratch.

Even educational games can be addictive

Of course another issue is access to the internet, with a recent study saying that 15% of people have no access. There's another issue to work on - social determinants of health already means that many people already have a disadvantage.

It is very satisfying to learn a new area and I admire people who follow this guideline to shared knowledge. "Give away everything you know, and more will come back to you" They have been a big help on this learning journey.