I have discussed the issue of patients not having access to most of the research conducted, sometimes even the studies they participated in. In this post, I want also to address two additional challenges within the research silo: 1) researching the wrong questions and 2) producing frameworks for patient or public involvement in health-related research that are not put to use by others.

Patient and public involvement (PPI) has gained popularity in healthcare, with policymakers, researchers, and research funding bodies emphasizing the importance of hearing from end-users. This has led to an abundance of guidance materials, including toolkits, aimed at illustrating best practices in PPI. A recent mapping exercise revealed a staggering 536 toolkits published over a ten-year period, indicating a rapid rate of production, especially between 2016 and 2020, with one toolkit being produced almost every two weeks. (Patient Library, n.d.)

One useful resource for exploring publications in this area is the Patient Library, where you can access different toolkits that have been published.

Within this extensive resource of frameworks, significant gaps remain in addressing the involvement of minorities in research and healthcare delivery changes. The Patient Library produced a report at the end of 2023 highlighting several shortcomings of these publications. One major challenge is practicality: these frameworks are often produced but rarely used. The question arises: how can potential users-—patients, providers, policymakers, etc.— keep up with or choose between more than 500 frameworks?

Greenhalgh and her colleagues addressed this issue by examining 60 publications. They found that "most published frameworks have been little used beyond the groups that developed them." In her recent research, Greenhalgh also suggested that a single, off-the-shelf framework may be less useful than a menu of evidence-based resources, which stakeholders can use to co-design their own frameworks. (Greenhalgh et al, 2019)

Another important finding from the Patient Library research is the issue of duplication and over-researching certain topics while failing to address existing gaps. The high number of publications in patient and public involvement in healthcare indicates that policymakers and research organizations value this topic and provide grants to support this area of research. However, like other research areas, when conducted in silos and driven by grants, not all questions get answered, and some topics are over-researched.(Brett et al, 2014) For example, a study done by the Patient Library shows that the two biggest areas that were over-researched in patient participation were general guidance on involving patients and the public, and how to involve patients in research. These two categories had an exact match in terms of quantity, with 127 documents in each. (Patient Library, n.d.)

Without sufficient patient involvement, the right questions cannot be answered. This leads to repetitive publications that few people use, and publications that not everyone can access. This is why collaboration, understanding what needs to be addressed, and ensuring open access to information are crucial. 

Let me give you a simple example. The pills that people living with Parkinson's disease have to take are very small, making it difficult for them to consume due to their condition. For years, people have discussed this issue online and in Amazon reviews, but researchers in the pharmaceutical industry often miss these voices and don't address such practical problems. There is often a gap between what the healthcare system wants to build, and the problems patients want to solve.

Even with all these frameworks, patients are still not being heard or not invited to propose which questions to ask. Research indicates that patients are usually asked to give feedback on completed work rather than being involved from the beginning. This leads to inaccuracies and unmet needs. Unlike other industries that have learned to involve people at the beginning of the innovation process, healthcare still lefts behind.

In her book Studying Those Who Study Us, Diana Forsythe discusses a study where AI kiosks were designed to answer questions for migraine patients. These questions were created by a single provider who treated migraine patients. The project ultimately failed because the provided data did not address the patients' primary concern: "Am I going to die?" This highlighted the disconnect between the provider's perspective and the patients' actual worries.

If we don’t ask the right questions, no matter how advanced the technology, we won’t help those who use our research, products, or services. Engage with patients early on and let them guide the questions that need to be explored.