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.

Telehealth - Necessity or Convenience?

For 30 years I’ve had rheumatoid arthritis so I’ve had more experience with the health care system than I ever imagined when I was a teenager. In many ways I’ve been fortunate – Toronto is a large urban center with many doctors and we have a single payer health care system in Canada. There are places in the world where I’d be bankrupt by now because of the medications, operations and treatments I’ve needed. 

So far my personal experience of telehealth has been only in distance education. At St Michael’s Hospital Dr Rachel Shupak has a program called Rx For Education for inflammatory arthritis patients.  The  Ontario Telehealth Network (OTN) broadcasts the sessions to rural communities. At Baycrest Health Sciences recently I saw the same thing. Their classrooms broadcast educational materials often and easily through the OTN.

 

As a frequent patient I have often wished for a remote experience of healthcare but for me at it would be a convenience, not a necessity. It would have been a huge help to my father in law as he cared for my frail Mother in law as they both aged. How can you drop a frail elderly person at the door and then leave them there while you park?

Access to care is not the same everywhere even in Canada. My friend in Timmins is on a year long waiting list for mental health care. It would be great if there were a quicker solution.

My next mental picture of telehealth features my friend Camea May. She lives in the Appalachian mountains and recently sent me a picture of herself, standing beside a telehealth robot.  She had such a badly broken leg that a distant expert was consulted on her care.

Camea and her new friend

Before the Global Telehealth2015 conference I read about the use of telehealth in countries where doctors are scarce and care is basic, where there is trauma or PTSD, and where it is almost impossible to offer care to people with mental health issues. This is where you see the true value of telehealth,  – where the need is great and the medical resources are scarce. It can make a very large difference in countries with few medical resources.

A few months ago social media led me to an online talk at the UK/Ireland Cochrane Conference. A friend (Marie Ennis O'Connor @JBBC) directed me to her own presentation but I watched the speaker before her first. His name is Athula Sumathipala and he put the healthcare situation into a global perspective with one sentence:

He said " 89% of the annual global expenditure on health is spent on 16% of the world's population that bears 7% of the global disease burden". He calls it a sad reality and a bitter truth. As far as research dollars are concerned, only 10% of research dollars are spent on studying the developing world's health problems. This is called the 10/90 divide.

So when I say autoimmune arthritis does not get enough research dollars, I am not considering global realities. 

Ideas and concepts now spread at the speed of social media. Discussions are no longer confined to one geographic area. With webinars and livestream conferences we can learn about global issues from people like Athula Sumathipala and Vikram Patel, to name only two. With tweetchats I can have good friends in countries I will probably never see. Listening to them talk about issues in their countries makes me aware of the differences and difficulties in other parts of the world on a more personal level.

I hope that the connections we make through social media will help us address inequities and ethical issues, and that the novel solutions and ideas we learn will spread and lead to progress in health equity in other parts of the world.

This is more than just fairness - it is an ethical issue, and global capitalism makes this hard to change.

Real Hands, Real People

Thank to my friends for sharing stories about their hands.  I find it helpful to hear what others experience and know I am not alone.

Note: Bear in mind that some of the people speaking have had rheumatoid arthritis from before biologic drugs were discovered, and are dealing with joints that were damaged due to ineffective treatment.

Gail's Hands:

On my right hand the first knuckle is already deformed and some of the others are too but not as much as that first one, and that's a part of the recent increase in pain in my hands.  The little knuckle has been hurting while my finger is swaying even more.  Sometimes my fingers ache like crazy but that comes and goes.  Sometimes I have deep aching here and there and that comes and goes.

Ring splints

Allie:

I have the swaying of my right hand - Ulnar Drift.  I have a lot of swollen synovial tissue under the fingers on the knuckles - especially my right hand.  About a year ago - after remaining fairly stable for years - the middle knuckles on my fingers became permanently swollen and I can no longer wear my rings because I can't get them over the knuckles.  It was mainly my right hand that was affected.  But, later on - my left hand also is having changes and the middle finger on my left hand is swollen and painful.

The pain in my hands kind of comes and goes or maybe I have just become used to the pain. The night splints that the occupational therapist made for me helped a lot but after several years, I quit wearing them because I felt I didn't need them. Now, I think I probably need new splints made - especially for my right wrist.

Resting splints

Julie:

I really didn't realize how awful my hands looked until I saw a fairly recent photo of me with both of my hands in front of me.  My fingers look awful and my right wrist is all swollen.  My right wrist is so painful that I am having problems cooking.  Well - also standing on my lousy feet. I never had the sensation that the joints are moving and tugging.  I think everything on me went slowly and I just didn't notice.

I saw a hand surgeon early on in my trip with RA.  At that time, it was really my right index finger that was really bothersome.  He described the surgery he would do and said it would take 6 to 8 weeks for recovery.  Then, to this statement, he said "I will become your best friend".

I didn't like the sound of the surgery or the fact that he expected me to have many more hand surgeries - so I just passed on the entire thing.  Yes - my hand looks awful and at times is painful.

Angela:

I can't say I ever liked my hand surgeon. I respected his skill at surgery and put up with the rest. He's the one who put his hand up like a stop sign to keep me from asking questions, who told the students not to  worry if patients said that they had trouble with personal care because "they'll figure it out" (and this with a room full of Occupational Therapists beside him).

My friend saw the same doctor once and he told the woman on the other side of the curtain, "Fine, we'll go ahead and take care of your hand" then when she was gone he said to the resident - "It will never be better". She told him that she hoped he would not lie to her the same way.

Polly:

The hand surgeon I saw in 2004 wouldn’t even attempt to repair my hands because he said the surgery I would have to have is not perfected. He said as long as I can use my thumb and “pointer” finger left to use, that I would be fine unless I was in pain 24/7.  Well I am not in pain, but I can't use any of my other fingers. They’re in a fist now.

I don’t think he would have said that had it been his hands.   It's maddening how they pooh pooh it all. So he didn’t even suggest having the surgery way back then.  Now when I went to another hand surgeon this year he said it could be done but it might or might not make me more functional. It depended on whether you talked to the Dr face to face or read his clinical summary where he said it was not likely to help. I think the summary is called CYA.

I asked him also...both hands at the same time?  Yes, you’ll still be able to use a couple of your fingers...  I said you know I live alone?  have pets? That’s what rehab will help you with. We can get you  a home health aide, house cleaning help. I can't even turn on the ignition of my car without a special soldered key turner.  I walked out knowing he wasn’t really concerned about me. When I found out he told me one thing and wrote another, I knew I would live with these hands.

Loyal pet Dolly