Saturday 19 September 2015

Bumps and boulders on the road for patients partnering with researchers

The first thing I learned when I was asked to be on a research team is that we don't make it easy for patients to be partners rather than subjects. These partnerships are new and now much demand but there are a lot of bumps and boulders.

That I overcame them was a great tribute to some very kind and persistent researchers. But relying on the kindness of researchers is not a systemic solution.

The known bumps

The studies on patient engagement in research identify a number of potential issues for patients or citizens partnering with researchers.  And I certainly encountered them. The main ones for me, are the following:

Learning the language:  Like in any industry, researchers have their own terms, acronyms and accepted turns of phrase. While there are lists of acronyms, in the end it just takes exposure and time. I thought I'd do up patient cheat sheet to be helpful to others. 
Learning the process of research: At a high level, this is not so strange for many of us from the corporate and other worlds. The main stages are: Applying for funds, planning, implementing, analyzing and KT (knowledge translation) otherwise known as  "getting the word out and hoping others pick up the ball."  All these stages have their own sub-elements which, again, takes time to figure out.   
Learning the role:  Like with any new venture, I had to figure out who's who and how I fit into the team. This is tricky as it seems to vary from team to team and partnering with patients is pretty new for all concerned. There is a certain amount of fumbling around by all parties until we are comfortable with each other. It is a combination of demonstrating my value to the team and my (hopefully) adequate people skills that helps me to settle into a team. 

As with anything new, there are those researchers who embrace the partnership, those who go along and those who are uncomfortable. Providing an orientation to help researchers become more comfortable with this new creature in their midst will go a long way to smoothing the road.
I had anticipated all of these bumps and was ready to work my way over them. What I didn't anticipate were the following unexpected boulders.

The unexpected boulders

The CCV: Imagine my surprise in finding my regular CV was not going to cut it for the funding application. This had served me well for years. Now I needed a research CV and was directed to provide my CIHR PIN number and CCV Confirmation number.  It took 8 rounds of emails with directions and questions and some extreme mental gymnastics to fit my life into the categories demanded by the online CCV system used by the research community. I know of colleagues who gave up on this.

So can the research world either let us submit our regular CVs or give us an easy online form that works for patient partners?

Certifications: There are rightly strong protocols to protect patients and their data and to conduct research in an ethical manner. The researchers are all up on this - or should be. To my surprise, because I would be working with the data, I was required to have up-to-date TCPS-2 (ethics) and ICH-GCP (Good Clinical Practices) certificates. So back to school for me. And I had to take these online certification courses which were fortunately free, if time-consuming.

So now I'm thinking, we need some serious preparation for patients and citizens who want to partner with research teams. At the very least, some up front warning would be helpful.

Some questions

How will we attract a diverse range and number of patients and citizens to participate as partners in research with the demands for specialized CVs and the need to train and get certifications?  Is it even realistic to expect any but the tenacious and well educated to want to partner with researchers?

The known challenges can be overcome with determination and time but these other obstacles are possible show stoppers. If we are to be serious about involving patients as partners in research, how can we smooth their way?