Exploring Patient Perspectives in Research Through PPI

Exploring Patient Perspectives in Research Through PPI

In the realm of health research, a growing movement is emphasizing the importance of patient-public involvement (PPI). This approach, defined as research 'with' patients and the public, not 'for' them, is becoming more common and is seen as a way to bridge the gap between scientists and the community.

A survey of principal investigators revealed that just over half of those involved in PPI were financially compensated in some way, with the main cost of PPI to researchers being time-related, but financial costs were also reported, typically attributed to reimbursement for the individuals involved.

One such individual is Kate, a mother diagnosed with breast cancer 10 years ago. After starting treatment, Kate's health deteriorated, affecting her ability to sleep, eat, and perform usual activities, and causing a decline in her mental health. Despite this, Kate viewed her part in the future of cancer research as enough of a reward.

However, not all patients share the same view. Some choose to "leave it to the experts" when committing to often toxic treatments. This is where PPI can be mutually beneficial, as patients may be more willing to provide samples or contribute to trials if they know the researcher is open to listening to them and has created a solid relationship with the community.

PPI is based on early and ongoing patient involvement as co-creators, emphasizing patient-centricity, trust-building, genuine engagement, and inclusive communication to achieve improved outcomes for those affected. Key elements include respectful, clear, and bidirectional communication, use of tailored, evidence-based engagement strategies, focus on inclusivity and equity, and building sustainable patient-driven innovation.

However, PPI is yet to become the standard in research, despite growing calls for increased engagement, due to concerns over the true value of PPI and tangible evidence of positive outcomes. Some researchers have faced criticism for treating PPI like a box-ticking exercise, while others, like Jennifer, stated that collaboration with patients "raises [her] enthusiasm to battle the challenges."

The NHS Health Research Authority has four main principles governing public involvement in research: involve the right people, involve enough people, involve those people enough, and describe how it helps. In situations where the research was too urgent to go through the usual relationship-building and approval processes typically involved in PPI, schemes like the COVID Public Involvement Matching Scheme have been implemented to "match" volunteers to COVID-19 studies.

Appropriate PPI gives agency to the people most impacted by the research, reducing fear and misunderstanding, and ensuring research is digestible for the wider community. Patients can play a large role in further communication of the research they have been involved in, preventing misconceptions that can arise from traditional communication of research.

However, some patients have reported needing references for applications, abandoning forms when they reached a level of complexity. This highlights the need for PPI to be accessible and inclusive for all, not just those with a background in science.

A 2020 metastatic myeloma clinical trial reported positive results, but a lack of real evaluation tools meant that the impact of PPI could not be accurately reported. This underscores the need for more robust methods to quantify the benefits of PPI, to ensure its continued growth and integration into health research.

In summary, best practices involve engaging patients as partners from the outset through respectful, inclusive, transparent, and technologically appropriate methods, building mutual trust and ownership to produce research that delivers better, more relevant health outcomes for patients.

1. The growing movement in health research, emphasizing patient-public involvement (PPI), emphasizes patient-centricity in genomics and other scientific researches related to medical-conditions such as cancer.
2. Kate, a breast-cancer patient, despite her health deterioration during treatment, viewed her part in the future of cancer research as a reward, and participated willingly in patient-led research initiatives.
3. Involving patients in clinical trials and genetic data analysis, like NGS, not only ensures the research is digestible for the wider community but also eliminates misconceptions that can arise from traditional research communication.
4. Despite the growing demand for increased engagement through PPI, some researchers are yet to fully embrace it, leading to criticism for treating it like a box-ticking exerciseor neglecting its accessibility for all.
5. One effective approach to address this challenge is the implementation of schemes like the COVID Public Involvement Matching Scheme, which helps to "match" volunteers to research initiatives when usual relationship-building and approval processes are too time-consuming.
6. To ensure the continued growth and integration of PPI into health research, robust methods to quantify its benefits are necessary, as evident in the lack of accurate reporting of PPI's impact on metastatic myeloma clinical trials in 2020.

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