Are We Asking the Right Questions? Patient Involvement (PI) in Clinical Practice

Traditionally, Patient Involvement (PI) is a part of a policy-related procedure called PPI (Patient & Public Involvement). It is practiced with most attention in the Commonwealth countries. I’ve interacted with patients, researchers, research participants and policy makers of and about this practice since 2011 until date. I first grazed shoulders with this idea when I was in semester-one, as part of a Masters in Applied Medical Anthropology at University College London. When it came to long-term studies, the department has been rated fourth globally for churning out high-calibre research design.

Years later, I was able to fully grasp the depth and breadth of this medical sub-culture, though this time in clinical practice.

The inclusion of patients and their loved ones in the study’s design is a cornerstone of these policies. Research questions are developed in collaboration with patients and their families, who are categorized into different groups based on factors essential to their experiences.

People who are living with the disorder or have a family member who is, can add questions to the study, which brings forth more real answers from the research.

When I work with patients of all ages, I always start by asking them, “What are the most important things you want me to ask you that I haven’t already?”

This line of thinking has great potential in clinical practice.

The majority of patients are taken aback when asked this. It opens the door for more depth and forgotten complaints to be added to the list. Interviews have a way of connecting deeply with people.

Filters change, guards drop, expectations shift. Change begins. Healing continues. Wellness becomes a routine experience. The struggle eases.

This is the initial correspondence. It is likely that some notable alterations have taken place. It might seem like nothing has changed at times. But if the patient is more regular in their follow-ups, I know something has moved forward. If the severity of the complaints has become less intense, less frequent, I know that we’ve moved a small mountain together.

At the same time, the process needs an update.

A good question is waiting in the wings.

“In retrospect, if we could go back in time, what was it that you would have asked me just before you left the first consultation?”

The answer will usually tell us (both the patient and I) the change in perspective since that first meeting.

In every follow up thereafter:

In my conversations with children, I usually ask them for a recommendation of a book, a film, a TV series, or a video game that they enjoy. And believe you me, this is the most fun part of the dialogue.

Inevitably, the answers usually start with, “My mum doesn’t know this yet, but..” — it’s never really incriminating; whatever it is that ends that sentence. They’re just not ready to share yet. And not too long after, they do share the “secret” with their parents or guardians. Or at the very least, a sibling.

The best part of a follow up is when I hear of a moment when they shared their most scary truth with their most scary parent. And that to me, is at the heart of adaptation of patient involvement in clinical practice.

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