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

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. 

Why Is My Silo Two Miles Away?

Today I watched a youtube video of the Institute of Health Services and Policy Research (IHSPR) Policy Rounds - Improving Care of Multiple Chronic Conditions The webinar is from March 26, 2014. I found out that in Ontario chronic disease accounted for at least 65% of direct health care costs in 2010/11 and it would not surprise me if that number is typical across Canada. In the US that percentage might not be the same since the health care system is different.

The Steering Committee that set direction for this discussion was composed of government and researchers who chose stakeholders to participate in the discussion about issues and challenges involved in dealing with patients with multiple chronic conditions. They were picked because they could bring unique views and experiences to bear on the challenge and they could champion actions to address the problem creatively within their constituencies. (Michael Wilson, PhD)

The part that really caught my attention was the breakdown of participants involved in the stakeholder dialogue
3 Policy Makers
9 Managers
3 Providers
5 Researchers

One of the statements the participants produced stressed collaboration both within teams and also across silos with the emphasis that each silo brings unique value to the overall goal. The plan is to continue to support bottom up and person centered approaches to developing models of care and working across silos.

The patient silo is miles away

At this point I'm really wondering why the patient silo is off in this field miles away from the other silos. After all where does the money in the health system come from?  There is only one source - the taxpayers. Why are patients not considered valuable stakeholders? If we want to work across silos I think everyone needs to be considered and included.

As much as some health care professionals fear the intrusion of the engaged and educated patient, it seems that policy makers and planners are even more worried about patient inclusion in health care planning. (Apologies to the rheumatology researchers who are including patients)

Among the suggested strategies to accomplish improvement in the treatment of chronic disease is developing a patient centered approach to health care and using patient friendly language. There are now more patients eager to be engaged in their own care; that will help. One of the tools to deal with multiple chronic diseases will be self management. "Using innovative, collaborative approaches to developing and supporting use of self-management tools and resources" as well as including older adults and those with chronic health conditions in random trials are other methods of making progress in this area.

It was a very useful webinar that made perfect sense. But again we don't see patients included in policy and planning. I feel that this problem is perfectly illustrated by ePatient Dave's rallying cry "Nothing about us without us."

With patients seen as the lowest level in healthcare it sounds as though we are perfectly positioned for the new bottom-up strategy.