Welcome to new Patient, Family, Donor Partner: Rienk de Vries

The CDTRP’s Patient, Family and Donor (PFD) Partnership Platform is growing and we’re pleased to welcome our newest member, Rienk de Vries. Rienk is a patient researcher and PFD representative on Theme 5. Our PFD Platform Manager, Manuel Escoto, caught up recently with Rienk to understand more about what her goals are for being a patient partner with the CDTRP.

What brought you to CDTRP’s Patient, Family, and Donor Research Platform?

Sandra Holdsworth and I are on a Patient and Caregiver Advisory Panel that provides feedback on a study using the ePROMS (electronic Patient Reported Outcome Measures) framework to improve patient-centred solid organ transplant care. The framework helps patients and caregivers assess, monitor, and improve ongoing physical and emotional functioning as well as overall quality of life.

The research team, led by Dr. Istvan Mucsi, a transplant nephrologist at the University Health Network in Toronto, will develop an online assessment and response toolkit and provide other useful resources to patients, caregivers and transplant professionals. Sandra and I discussed and provided feedback on various aspects of the draft assessment tool and website design and Sandra suggested that there were a number of other ongoing research activities coordinated through CDTRP in which I might have an interest.

When I looked further at the research being done – it became clear to me that CDTRP is filling a major gap that exists in traditional research … by engaging the “patient” in the research in a meaningful way to make sure any research finds the right balance between the academic and the practical from the perspectives of all stakeholders.

What are your areas of research interest and experience in patient research?

All 5 research themes are of interest, but I would like to focus on Theme 5: Restoring Long-Term Health. In particular, I am interested in the journey of the post-transplant patient from the perspective of all quality of life indicators – including physical and mental health, but also social and economic perspectives. And the view from the perspectives of both the patient and their caregivers or partners on that journey. as well as the engagement levels of patients to move increasingly towards self-determination and self-care. As mentioned above, I am already involved in one research project in this area, and I would like to be involved in others.

My personal aim after my transplant was to get back to “normal” as quickly as possible – including getting home from the hospital, getting back to work full time, getting back into my exercise programs / playing soccer and rebuilding my personal and professional networks after years of consciously dropping piece after piece of my life. And I was lucky enough to be able to do that. But I had lots of support and all the resources I needed. Not everyone is as fortunate. I would like to be involved in any research that will help patients better navigate that journey to enjoy a higher sustained quality of life.

What new areas of interest do you want to explore, and which skills would you like to build on?

There have been many developments in the application of technologies and tools that bring data and analysis closer and into the hands of patients. I would like to apply and further develop my skills in the identification and implementation of IT solutions to bring the power of data and information to the patient and caregivers’ fingertips. For example, the latest mobile phones and available apps can render 3D models that would be much more effective at displaying exercises. Improved sensors are also providing more accurate readings of critical health parameters, and devices (e.g., pacemakers / ICDs) can be interrogated locally, then periodically uploaded and shared with healthcare professionals.

Tell us a fun fact about yourself!

I have spent most of my career in the water industry in Canada, the US, England and the Caribbean. I love my job, so much so that wherever we go on holiday I always try to tour the local water or wastewater plant – not always in alignment with the rest of the family’s idea of a fun time. I have walked in the sewers of cities including London, Paris (there it is actually a tourist attraction), Detroit, Cleveland, Minneapolis, Baltimore and Washington DC, have seen many more and love the hidden histories captured within each. Now, of course, sewage is being analyzed and tracked to provide an early warning of COVID-19 outbreaks.

About the Patient, Family and Donor Partnership Platform

A strong, central feature of the CDTRP, the Patient, Family and Donor (PFD) Partnership Platform gives patients, caregivers and living donors a voice while offering an environment to collaborate between families, investigators, project leads and CDTRP Themes. Nationwide patient, family and donor participation is a research priority in all CDTRP projects, contributing to the transfer of knowledge and positive impact on transplantation and donation in Canada.

Learn more on the PFD Platform here.