Patient and Public Involvement: A seat at the table

by Ross Laidlaw · May 10, 2019

Image Credit: Roxanna Munir

If you had a condition like rheumatoid arthritis, which has wide-ranging effects across the body and makes it difficult to complete everyday tasks, what aspects of the disease would you like researchers to focus on? Would you like research to try and aid your ability to carry out tasks, manage pain or even work towards a cure? These are questions that patients are not often asked when research is carried out, even though as patients they are impacted by research more than anyone else and thus deserve a seat at the table on matters which could have serious effects on their lives. With PPI they can.

What is PPI?

PPI, or Patient and Public Involvement, in this case, has nothing to do with nuisance phone calls; instead, it is a term used to describe research where patients or the public are directly involved in scientific research. While PPI is not categorised exactly the same across the board, in the UK charities and organizations, like the National Institute for Health Research (NIHR) and Arthritis Research UK, usually group the types of PPI into three different camps: involvement, participation and engagement¹². Involvement is when members of the public are given the opportunity to work directly on the study whether that be writing grant applications, reviewing materials used or, in the best cases, critiquing the research method or actually undertaking parts of the study themselves. Participation, like the name suggests, is the public taking part in scientific research studies, while engagement is when the researchers disseminate the findings of studies or discuss future research areas with the public, either at events or through patient representatives. Each of these areas has their own merits: Participation allows patients to take that initial step into the world of research, engagement helps increase public awareness of such conditions, and involvement allows patients to actually help guide research to their needs. While it’s all well and good to talk about PPI itself, you may be wondering what evidence supports its use.

Why is PPI important?

Researchers are undoubtedly experts in their respective field. However, they sometimes fail to understand the needs of the patients that their decisions ultimately affect; for example, whether treatment of the disease matters over management of pain or ability to do day-to-day tasks. A study by led by Solberg³ showed when it comes to back and abdominal pain, physicians rated the importance of treating these problems significantly lower compared with patients. Another study by Dyson and colleagues⁴ investigated what outcomes parents of children who’ve had acute respiratory infections preferred from treatment and contrasted their opinions against those of physicians. They found that parents thought the factors affecting quality of life like length of stay and the severity of symptoms were the most important outcomes, while important outcomes reported by physicians mainly focused on factors affecting survival like complications and side effects, among others. Taken on a surface level, these studies demonstrate that patient and researcher priorities can sometimes be at odds with each other, but the implications these have on research are more noteworthy. A meaningful outcome of a study to researchers may be a change in the level of markers of disease, such as c-reactive protein (a marker of inflammation). While this can be an important marker for assessing patient survival (a factor which patients undoubtedly care about), this may not properly assess patients quality of life, a factor which remains significant to patients and one that researchers should consider in tandem with survival rate when determining whether a study is successful. Though a study may be discussed in the scientific community, if it cannot be justified to the patients themselves, it could ultimately have very little actual impact.

While there is a clear benefit for patients, they are not the people who need to be convinced of the merits of PPI. Researchers, understandably, would probably want to know more about what effect PPI has on the research itself and whether this effect is detrimental or not. Recruitment for clinical studies is a major problem that researchers face and one that can sink a trial; for rare diseases it can be even harder to recruit suitable candidates⁵. However, a study by the Economist showed that trials which include roles for patients were more likely to be successfully launched and, for the most part, have faster recruitment periods, especially in the case of trials into rare diseases⁶.

What does the future bring for PPI?

While all the research mentioned should signal a greater interest in PPI by patients and researchers, there is still work to be done. A study published in May 2018⁷ looked at the extent of PPI across 200 grants funded by the NIHR School for Primary Care Research and found that while 57% of the grants included plans for PPI during the study, only 24% had PPI early on in the development of the project. Research suggests this is one of the most opportune points to include PPI for increasing study impact⁸. There is, however, plenty to be optimistic about, with pharmaceutical companies like GSK beginning to follow in the footsteps of health agencies and charities in terms of PPI⁹. This could provide a greater incentive for researchers to include patient views in their studies through greater investment, though steps will need to be taken to make sure the PPI is not tokenistic.

If anything is to be taken away from this, it’s that PPI is not the enemy of research. Researchers may need to compromise over some things, but the benefits it brings in terms of monetary funding and greater recruitment opportunities make it seemingly irresistible, and, with more studies into PPI, the benefits may be greater than we realise.

This article was specialist edited by Kirstin Leslie and copy-edited by Audrey Gillies.