Sonia Nizzer is a Research Associate at VHA and is the primary contact for client partners who are working with VHA’s Research team on projects to help clients and their caregivers. VHA tries to involve clients’ voices in every aspect of our work, and the Research team has made this an important priority.
“We see the impact client and caregiver involvement has had on other initiatives and areas of VHA. We want to involve them in our research work so we can ensure the end products of our initiatives are the most suited for clients and caregivers,” says Nizzer.
Research projects have long been directed by academic institutions or large governing bodies making the decisions about what should be explored and what questions need to be answered. “We want to engage clients in helping to direct the research at VHA. We are in a unique position being so close to patient care in home health care that we have the opportunity to reach out to our clients and caregivers to ask for their help in guiding our research,” adds Nizzer.
One example of this client engagement is the PhotoVoice study called The Little Things. Client partners were involved from the very beginning helping to shape this project that explored the perceptions and experiences of client and family-centered care through photographs by families with children with complex medical needs. “For the PhotoVoice study, a client partner helped to write the initial proposal and was involved in decisions regarding how to conduct the research throughout the project,” shares Nizzer. “This is ideally how we would like to conduct all of our projects, co-designing with client partners along each step of the process, and that is what we are working towards.”
Client partners get involved with research in a number of ways. Members of VHA’s Client Partner Advisory Council have expressed interest in working with the Research department and have helped to hire new members of the Research team. Other client partners have been involved in making decisions regarding VHA’s Junior Researcher Development Award as well as our internal fellowship program. “Client partners review the applications alongside the Research staff members. We discuss the applications and make decisions together,” Nizzer says, “We see this as a very collaborative process with client partners having an equal voice to our staff members. In this way, client partners are playing a key role in directing the focus and shape for our research going forward.”
“Some clients have told us they thought research would be intimidating and would involve confusing language. We are working to bring down those barriers as much as possible. We want people to feel comfortable participating and to be excited about research. When clients who have never been involved in a research project before tell us what a positive experience it has been, that feels great and makes us feel we are doing something well. We know how much client partners have to contribute due to their lived experience.”
A new project VHA Research is working on with client partners is called Parent Home Hacks. The website www.parenthomehacks.com is a resource VHA is developing with client partners who are parents of children with medical complexities. The site is intended to be a hub for parents to share ‘hacks’ that they’ve created at home to solve practical care challenges for their children. You can learn more about this website by reading our Necessity is the Parent of Invention article on VHA’s website.
VHA’s Research team is always looking for more client partners to participate in various projects. If you’re interested in becoming a research client partner or getting involved with research at VHA, contact email@example.com.
Client Spotlight: Harold Fortis
Harold Fortis, one of VHA’s research client partners, has been the shining star on many recent research initiatives. Harold became connected with VHA when his daughter received services due to her complex medical needs. VHA provided nursing, personal support and wound care for her. These were lifesaving for Harold’s daughter and greatly improved her quality of life.
A few years ago, Harold attended a research advisory meeting presenting VHA’s Strategic Research Vision and the department’s five-year strategic priorities. “I was fascinated by the process of the Research team moving through the earlier years of visibility and support in 2009, to collaborating with partners in 2015, and ultimately to driving solutions in 2020. I decided I wanted to play a role,” shares Harold.
Recently, Harold was part of the hiring panel for a new Research Manager for VHA. Harold wanted to ensure the new team member would allow the department to grow and become even more collaborative. His overall goal working with the Research team has been to help raise their profile, to support their long-term vision, and to remove any stigma around the word and idea of ‘research’, to make sure it is accessible and that VHA’s research projects are making a valuable contribution.
“Joining VHA’s research team has been quite rewarding for me,” says Harold. “There is never a dull moment as you work through the ever-expanding list of projects, funding, and partnerships, all in an effort to raise VHA’s profile and impact.”
In Memoriam: Frances Silverman
Frances Silverman joined the Research Advisory Committee in 2016 as a client partner. As a distinguished professor and well-respected scientist at the University of Toronto, Frances’ insight as a caregiver and researcher was instrumental in the development of VHA’s Research Fellowship Program and Junior Researcher Development programs. Frances passed away in December of 2018.
Aside from contributing her time to developing VHA studies, Frances cared for her partner who received home care services from VHA for many years. Thank you Frances. We will miss you.