Shouldn't Our Minister of Health Be Our "First Patient"?

How should the government "engage" patients? 

Yesterday on behalf of the Ministry, I and a number of my fellow seasoned patient advisors, explored this question. Great! Makes perfect sense, if you want to know how to engage patients, ask us.

Eric Hoskins, our Ontario Minister of Health, has recently put forth a discussion paper called "Patients First" suggesting structural changes designed to put patients and their needs at the centre of healthcare. And now he is asking us how to more directly involve patients in the system.

I am taking him up on his offer.

Three key questions

To start with, I asked myself:

• What would happen if the Minister could hear directly from the public and patients unfiltered by any middleman whose conceptual frame or vested interests might skew the message?

• How would that raise his profile and give him more power to make difficult changes?

• How might he easily collaborate directly with existing informed patient advisors to think outside the current healthcare box? 

I've been thinking a lot about how we, the public and patients, can work with the policy makers, practitioners, researchers and healthcare organizations. 

What grist went into my thinking?

Why think about this? Because I've been involved as a patient advisor for about 5 years - with a funding agency, my local hospital, with HQO (Health Quality Ontario), with AFHTO (Association of Family Health Teams of Ontario) and with other projects and organizations directly and as a Patients Canada referral. I've seen how involving patients can grow from toe-in-the-water engagement, through collaboration to true partnership as each side of the partnership gains experience and confidence.  I've shared the excitement when both partners pool their efforts and come up with outside-the-box solutions. 

And I'm not just on my own. There is a growing number of us who network informally, keep each other up-to-date, share experiences and constantly share ideas about how to improve our system.

How I see patient involvement with government conceptually

An unfiltered stream of 

patient ideas and partnership points

Now thoughts on how to get there

Why not start by leveraging what already exists in the councils and groups of patient advisors scattered throughout the system? This would be quick to do, not costly, and a very powerful way to connect directly with a wide range of us across the Province.

Let's throw out the old way of hearing our "input" filtered through all sorts of professionals who massage our messages into reports that we don't get to comment on. Let the vested professional interests keep their strongly established channels of communication with the Ministry. And let us have ours - unfiltered. Let us surprise you with our knowledge and our passion to have the best health system.

How might this work? Let me get practical.

Minister of Health as "First Patient"

Be a champion not just in word but in deed, Mr. Minister. 

Involve us. 

Become our First Patient.

Create a council of public and patients who are interested in participating in the ongoing development of health strategy and the setting of priorities for transforming the system into being truly "patients first."  The Council would report directly to the Minister and be supported by his proxy, the Deputy Minister. There are hospitals who have set up similar structures where the councils participate in decision-making and are not merely advisory bodies. These can be models to draw on.

The Council would need support in the way of coordination, facilitation, recruitment and member support. The support group would take direction from the Council, support their work and report to the Deputy Minister.

The Council members or others from the public could be embedded in all the working groups and policy initiatives in the Ministry according to the interests and aptitudes of the participants. The support group could enable this as well -- not unlike the patient engagement departments in the hospitals that partner with, not merely engage patients.

So that's for starters.

Companion Champions

Many of our 14 LHINs (Local Health Integration Networks) or health authorities already have community councils. Let's use them in a systematic way.

These regional councils could provide a two-way flow of discussion and debate with the Ministry Council particularly on policy and policy implementation issues. Think of the rich regional nuances that could be shared with the central Council and the Minister, our First Patient.

Championing the Ground Game

Why not use all the existing patient councils and panels currently found in the points of care organizations like hospitals, long term care facilities, some home care organizations and so on?

Each LHIN should, and probably does, know which of the institutions under their jurisdiction have involved patients. As they plan the implementation of new policies, practices and services, these groups can be vital allies in helping to get it right.  They are deeply connected within their communities and can spot opportunities to strengthen these ties to improve the patient journey across the silos. 

Patients Supporting the First Patient

Policy is all well and good but it needs to pass into reality.

With the complexity of competing interests, the best intentioned Ministers have struggled to implement change that is best for patients without being pulled off focus by powerful forces looking after their own interests. It has become a balancing act trading off among these interests -- while patients' interests often fall to the side.

• Imagine harnessing the patient perspective and drive for improvement to focus towards change that really does put patients first. 

• Imagine harvesting the practical, on-the-ground experience we advisors bring to implementing changes that indeed make the lives of patients and caregivers so much better.    

• Imagine healthcare providers working every day in an environment where they know they are supported by their patient partners because they are working together for improvement.

What a role the First Patient could play!  

What support we can offer him as the very people he serves!

Public Collaboration with the First Patient

Think of it. This could be a direct pipeline between the Minister and the public. This could give the Minister direct access to the ideas and experiences of those patients and caregivers collaborating with the front line to make health service delivery more patient centred.

This is totally doable. 

It builds on the groundswell of those of us already connected with the system and our partners who have already invited us in.  

All it takes is for our First Patient to make the first call.