In this topic page, we discuss why researchers and patients wanted to get involved in patient-researcher partnerships. People told us about their personal motivations and often about wanting to address a particular gap in care that they had experienced - these were the two most common reasons people wanted to become involved with research partnerships.
Many participants told us they wanted to give back to help improve care and contribute to research based on their own experiences either as a patient or caregiver. The lived experience that the patient partners brought to the projects included a wide range of conditions, illnesses and care journeys, such as addiction, rare genetic diseases, Human Immunodeficiency Virus (HIV), heart disease and general surgery). Likewise, the types of research they engaged in was widely variable.
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Researcher motivations to involve patient partners
For the most part, people wanted to get involved in research partnerships to help move research forward, and improve the healthcare experience for themselves and others.
In some cases, getting involved in research was a necessity for patients to improve their current situation. For example, one patient became involved in research because there were no treatments for HIV at the time of her diagnosis, and in particular, there was no research focusing on women and HIV.
Others observed that in certain research areas, patient partners were lacking. For example, one caregiver felt that researchers were coming up with their own ideas about how to research children and disability, without actually including children and their families as part of the process to identify relevant research priorities.
Many people found their experience as a patient partner to be rewarding and interesting. People were excited to contribute to improving patient care outcomes, and expressed continued interest in being involved as a patient partner.
However, patient motivations to stay involved as a partner in research sometimes changed over time. For example, one patient felt that they did not have much to contribute as a patient partner because they were no longer in active cancer treatment and unaware of current treatments and technologies. Although another patient no longer needed care, they felt that they still had much to offer as a patient partner. To read more about patient partner roles, you can visit Role Determination.
Although people were often driven by personal reasons to be involved as a patient partner, they were still reflective about potential opportunities and if it was the right decision for them. For example, patients would consider “Is the timing right?” or “Do I want to partner with this specific research group?” Although patient partners felt that compensation was important to acknowledge their time and contributions, compensation was not mentioned as a reason why patients got involved as partners in research. To read more about how patients’ contributions to research are valued, you can visit Valuing Contributions.
Researchers mentioned many reasons why they were interested in working with patient partners. For example, they sought input provided by patient partners to help researchers decide on appropriate research questions to address gaps they observed in their area of research and/or clinical practice.
Researchers were reflective about their own research and partnership experiences, and wondered if their work was in fact having an impact on the population of interest. Researchers were thus motivated to include patient partners on projects to focus on outcomes that would have more meaning to patients and their care.
Furthermore, for researchers engaging with patients as advocates, advisors, or participants, they had the opportunity for patient involvement in research to evolve into a partnership. For example, one researcher found the exchange of ideas between researchers and patients slowly evolved into a partnership, even though the project itself did not change.
As well, some researchers became interested in patient-researcher partnerships after observing fellow colleagues who have had patient partners on their research team or when exposed to the work of others through scientific publications.