Being a Patient Advisor: One of the Drawbacks

It has been an illuminating time recently on social media, hearing patients and caregivers express feelings of frustration, and of being used and vulnerable.

It's likely they too have been described as "Expert Patients" or "Professional Patients" to their faces, and in referring to people like them. I find the implications of both expressions offensive in their suggestion that I am taking a space where an 'unheard voice' should be sitting.

Just this week in a tweet chat a participant said a _ xy _ _ initiative will have failed if we simply give greater voice to those who already have loud voices, and I doubt he was referring to researchers, professionals, or funders

I did not choose to become a patient; none of us do. I developed a chronic disease 30 years ago that continues to this day and has seriously damaged my bones and joints. I get involved with issues and causes and try to contribute positively to finding solutions or answers that will effect change because I know many system weaknesses and pressure points first hand.

Now that I have developed more knowledge about the health care system I can deal with it better on my own behalf and can also be involved in efforts to improve the situation for other patients and caregivers.

But as Dawn Richards said in her BMJ patient blog this year, the patient is also a person.

In my deepest self I am not a patient, but in any interaction with the health system, that's my assigned persona. Being the 'Expert Patient' that I am considered to be does not mean that I have stopped having my own inconvenient personal encounters with health care.

a) Being knowledgeable does not mean I don't need medical help.
b) Expending my energy as a volunteer does not mean I am healthy.
c) Spending hours every week reading and learning enough to be able to follow and contribute to high-level conversations about system issues should not be something used against me.
d) It is not the job of patient volunteers to make the volunteer pool diverse and inclusive.
e) Not everyone who would like to volunteer is able to. 

It's ironic that those who are least able are often the only volunteers around the table, giving their own time to benefit others.

Another issue is patient engagement as highlighted recently by Isabel Jordan @seastarbattitta. Her story of being profoundly disregarded after working on a project as a team member, and then being ignored can be taken as a lesson in how NOT TO engage patients.

When I began to be involved as a patient partner, or as a conference invitee I was excited and happy just to be there. After years of experience my sense of tokenistic involvement is a lot sharper. One of my older posts is about the Authentic Patient Voice and how much I wonder what the main agenda items at meetings would be if patients choose them without being 'guided' by well-meaning professionals.

It is disturbing to see patients characterized as being responsible for overcrowded emergency departments, as seekers of pain treatment, as pushing doctors into prescribing unneeded antibiotics and tests, and as non-compliant with medications. It only makes sense to involve all members of the team in creating solutions for health system problems, and that team includes patients, who are actually paying for the whole health edifice as taxpayers and as users of non-covered services.

When volunteering as a patient advisor I don't like being called an 'expert patient' or 'professional patient'. Gaining experience with the health care system was never my goal. The work involved in being a patient is a real burden.

If #patientengagement specialists look at me and wish I were an unheard voice, rather than an older white woman who is retired, why don't they work harder at inclusion? They could reach out to communities that include the people they would like to see, and invite them to participate, or at least ask them about methods of participation that would make them comfortable with the process.

If researchers or organizations feel their initiatives will have failed if they simply give greater voice to those who already have loud voices, what are they going to do about it? 

Blaming the people who are helping you now will not attract people with different viewpoints or backgrounds. As a person who spent 20 years recruiting I know it takes time, energy, and innovative strategies to include people you seldom see represented around the table.


Twitter persons who informed this blog post included: @to_dpr @solidfooting, @PFEAMorin, @amaybee, @couragesings, @seastarbattita. I am @anetto

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

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.

Power Equality: Not Even on the Radar

A few years ago I was pleased to be invited to attend a conference called "Reaching the Summit: Leading the way from Interprofessional Education to Practice". Having patients included with educators and practitioners meant that the healthcare stakeholders sitting around the table were representative of more members involved in the health team.

It was a little disconcerting when I looked back at the list of Summit Registrants prior to writing this post and saw that under the title and the occupation columns the patients were all listed as "Patient Guests" in both columns. That seems to imply that our place is not secure - maybe it isn't a given that patients will always be invited to participate.

We're trying to make the right connections

At the event a large part of the afternoon was spent in breakout sessions, each one with a patient representative. The teams were composed of people working in hospital administration, in medical education, clinicians, allied professionals and, as at the IDEO Design Challenge, the variety of opinions led to strong and useful conclusions and strategies.

At one point in the session I commented that the very words 'inter-professional collaboration' on their own seem to exclude patients. With that as the conference description I did not feel originally that I belonged in this discussion.  It was wonderful to hear that others at the table agreed with me. In fact the facilitator of our session had written a paper on that topic titled Interprofessional jargon: How is it exclusionary. Cultural determinants of language use in health care practice!

With exclusion on my mind, I transcribed this sentence from a webinar on YouTube on the topic of Patient and Family Engagement:
"In summary, we can think of patient and family centered care as the umbrella term for the approach or, as then is implicit, the container concept that encompasses the elements and arranges the activities that come to define patient engagement, towards the ultimate aim of improving patient experiences and outcomes."

It does not sound like "Let's engage the patients!" language to me.

Here's a definition of Patient Experience from The Beryl Institute:
"The sum of all interactions, shaped by an organization's culture, that influences perceptions across the continuum of care."

I wonder if healthcare organizations give much thought to engaging patients and families so they can provide input and influence decisions before they are made.

                       It takes co-ordination to make all of the components work together

This blog post by Dr. Matthew Katz, on the Mayo Clinic website, E-Patients Deserve E-Doctors: Addressing the Needs of Both to Make Healthcare Better for Everyone makes great points.  Here are a few quotes from his excellent post:

"Empowering patients and doctors ensures they can work together. If patients and doctors don’t stand up for themselves, other stakeholders  (e.g. hospitals, insurers, industry) may unwittingly make things worse.

Thoughtful, vocal patients, caregivers and doctors should stand together. Even when we disagree, we can respect our differences while working toward solutions, both in clinic and for the health care system. We need each other. And if we support each other, the entire health care system will be the better for it."

I encourage you to read the whole post. The idea  of doctors and patients as natural allies seems like the right choice to make.

Self Management: Join The Team

When writing about patient engagement it so often sounds like there are many people out there supporting this effort. In reality there are brief encounters with doctors and their staff members involved in patient care. The rest of the "support" community" such as lab workers and many of the technicians who conduct tests, are so jaded and overworked that often I just feel 'processed'. They are also far more protective of my data than is logical, even telling me that it is illegal to give me info about myself ever because it belongs to the doctor.

I've been fortunate to have allied health professionals who are very encouraging and full of good advice. I owe a lot to physiotherapists, occupational therapists and orthotists.

Sometimes I wonder if it's possible to have a chronic disease and still be considered a member of the "worried well."

                                            Worried and well?

I found this PhD thesis "Capturing daily fluctuations, flare and self-management in Rheumatoid Arthritis: The patient perspective." written by Caroline Flurey.  It has been published as a book and is well worth reading.

There were interesting insights into the way patients look at their lives. One is the finding of "four different experiences of daily life with RA: 

1. Feeling Good
2. Taking Active Control
3. Keeping RA in its Place, and 
4. Struggling Through." (Mostly male)

The other was this description of flares"
"Two different flare-types have been identified: "Inflammatory Flare" (defined by pain and inflammation) and "Avalanche Flare (defined by the cascading effect of inflammatory symptoms, emotions and life events)." She has great insights and the paper also is a good resource to identify past research relating to daily patient struggles with Rheumatoid Disease.

                                        solar flare from nasa.gov

Speaking of struggles here's a look at what my friend Patty says about things that make her indignant:

"I got copies of all the tests and reports that the specialist is sending to my primary doctor.  Well, on the notes under General Appearance the hepatologist noted: "Looks chronically ill".  Nice, huh? That added to my day. I know pain, anxiety, stress and 30 yrs of RA can make you look sick. I'm sure I will mention this to him when I have my appointment.  I mean, there is another way of saying this, isn't there?"

                                        You don't look at all well

And here is her experience with feet:

"I know a lot of rheumatoid arthritis patients have a high tolerance level for pain. My foot Dr told me that RA'ers really can handle foot surgery. "You can tell who deals with pain everyday"  he said "normal people whine a lot about it". Guess we don't whine as much because we're used to it. Have you tried New Balance shoes? They're a godsend.  My podiatrist recommends them with my orthotics."

                                        Bare feet difficult with RA

Feet were the problem that led to my diagnosis of RA. The pain was too much to deal with for the long term so I chose surgery. Now I have had my forefoot (bones near the toes) reconstructed.

Though doctors don't go out of their way to use this term anymore , forefoot reconstruction  is considered "salvage surgery".  The heads of my metatarsal bones have been removed so I don't get the “walking on marbles” feeling anymore.

                                                              Try walking on these

With good orthotics and an ankle brace my gait looks pretty normal and my feet are comfortable.

  
Even having the above operation does not stop RA It can progress through the foot. It progresses to the midfoot and then to hindfoot. At the hindfoot it can seem that you have pain in the ankle but it is really lower down in the small bones below and in front of the ankle. They can be fused to prevent pain, or they may also fuse on their own.

It's well worth the struggle to gain knowledge and become comfortable with the correct terms to describe your symptoms. It helps you to join your care team.

Things Are Different At The Doctor

This week I had to go to see my GP doctor for a visit because I have been upping my dosage of methotrexate (MTX) to the maximum. (doctors' orders) It was a bit difficult to find a way to manage this but I did. The only problem that arose has been the development of stubborn mouth sores that the usual treatments did nothing to help.

                                          injectable methotrexate

To prepare for the appointment the first thing I did to find information was to ask fellow members in an online RA group about treatments they had used successfully. I got this answer "My primary care physician prescribed a paste called triamcinolone .. that seems to work overnight for me.  I think it came in a 0.1% paste.  It really helped  me. I put it on right before bed because it is pasty and gritty...but did the trick." 

Next I checked Dr. Irwin Lim's blog called BJC Health's Connected Care. He's an Australian rheumatologist who practices in a team setting in Sydney, Australia. I knew that one of his most popular posts ever was about methotrexate, so after reading it again I asked him about mouth ulcers and MTX in the comments section. He said he uses folinic acid and sometimes lowers the dosage in his patients. 

                                          At the doctor

That meant that when I walked into my doctor's office I already knew a lot about the issues and possible solutions. These prior interactions gave me an understanding that seemed to be well founded.  When the doctor suggested trying an alcohol free mouthwash I was confident enough of my information to request what my friend suggested and others validated. 

Thank goodness I did not have to try to convince a friend who is in healthcare that it was a good treatment. She's a skeptic who said "The sores were probably getting better already" when I told her how well it had worked.

Thinking back to my past history of doctor visits I used to be ready to accept the first solution or idea presented. In some cases that led to more visits. Being a meek and uninformed patient seldom helped me.

Being an active participant in your own care may come naturally, but it was a skill I had to learn. Reading online journals, articles and about the experiences of other patients in forums and blogs helped me to gain confidence in myself. Now even when I'm not asked I join the discussion and ask questions as well.

                                        Strong and active patient

With this collaborative approach I see my doctor less often. It took me until now to notice how much of a change there has been from the early days. This week it seemed so clear that things were different.

Here is what Stephen Wilkins says about two different ways of looking at what is popularly called patient engagement (which means the active involvement of the patient), and who benefits from these approaches. His ideas about two outlooks he has observed in health care ring true to me.  Are we engaged as patients "to advance our activation, quality of care, clinical outcomes and the patient experience" or is the intention to make us a source of cheap labor?

We'll keep our eyes on that issue.