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.

What do you want researchers to find out for you?

I've heard a lot of talk this past year about patients being more involved in research and in decision making. People in high places are talking about including the patient voice, from Ontario's Health Minister Eric Hoskins on Thursday at Health Quality Transformation 2014, to the Canadian Foundation for Healthcare Improvement (CFHI).

Minister Eric Hoskins said the first priority is to create and grow a patient centered health system. CFHI (Canadian Foundation for Health Improvement) says they are "Putting Patients at the Centre of Care" and they are behind the Strategy for Patient-Oriented Research (SPOR) which has big research projects coming up. These indicators sound as though the patient rallying cry of "Nothing about me without me" has been heard.

This does not guarantee success - there are many forces that want to see their own vision of participatory medicine, some because of profit, some who like the status quo, and others who resist change.

I was involved in a tweet chat this weekend with The Arthritis Research Centre and their Patient Advisory Board. This organization and their researchers have found ways to include patients and their views throughout the research process. ROAR stands for Reaching Out with Arthritis Research.

The event featured researchers speaking about their new projects to an audience that included anyone who wanted to listen to the live webinar or be in the in-person audience. That's a big change from the usual way we hear about and use research in our own lives.

They want to know what the audience wants to see and hear at the next eROAR event. So I take that to be an open question. Let them know what you want to hear about.

Let them hear what you want to see studied.

They'll have to use those ideas to get grants to do the research so it may be a long shot but I'm betting you all have at least two questions that you want answered.

What questions do you have that you think are being missed and neglected in your health area?
Do you ever look at research papers and wonder who on earth would have picked ____ as a research topic? I have been saving some doozies that I just won't post and let them see the light of day.

I'll forward all responses from comments to the Arthritis Research Centre, or you can send them direct at their website. It doesn't matter what country you're in. You know researchers - they all share. Your ideas won't go to waste.

ARC researchers, bloggers, and Arthritis Society representative

If you are interested in a definition of Patient Centered Healthcare I have linked to a paper by Donald Berwick that has a good discussion of the concept.