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:
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.
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.
The unexpected boulders
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 questionsHow 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?