In the 1970s, the American physician and pioneer in medical informatics Warner V. Slack (1933–2018) made a statement that is frequently cited in discussions about patient participation: the most underutilized resource in healthcare is patients. It is a statement that gets quoted often, but I believe people rarely stop to consider what it actually means. I have thought about this quite a lot, and I wanted to explain my view.

In healthcare, there is much talk about patient participation and the importance of moving patients from being passive recipients of care to becoming active co-creators. This is a very positive shift. But… what is it, exactly, that patients are supposed to be co-creators in? And a resource for?

The most common interpretation of Slack’s words is that patients are a resource for healthcare — an untapped asset that the health system should make better use of. But I think that is entirely the wrong direction, and I want to turn the reasoning around:

The entire justification for healthcare’s existence rests on healthcare being a resource for us patients. We patients should never have to be a resource for the care we seek help from when we are ill.

Being a co-creator or participant in care means that a patient’s value is measured primarily by what they can contribute to the system, rather than by how care can help the patient. It reflects a fundamental logic in which healthcare is the centre and the patient is a means to make the system function better.

In practice, this might mean that patients are expected to adapt to schedules and routines that suit the system rather than their own lives. It might mean sharing data, experiences, or personal stories — not primarily because it benefits their own care, but because it is valuable for research, quality improvement, or system development. It might mean being “compliant” and following prescriptions, not because the patient understands and agrees, but because it reduces the burden on the system.

There is, of course, nothing wrong with patients contributing to the development of healthcare — that can absolutely be meaningful and important. The problem arises when this becomes the dominant interpretation of what patient participation means. When the question “how can we involve patients?” actually means “how can we get patients to help us?”, we have lost sight of who is there for whom.

This logic also risks creating a new form of inequality: patients who have the energy, language, and resources to be active and cooperative become “good” patients, rewarded with better care, while those who are too ill, too exhausted, or too vulnerable to meet the system’s expectations fall even further behind. Being an active patient becomes a performance to deliver rather than a right.

And this is where it truly matters: research shows that healthcare contributes only around ten percent of a person’s health (Schroeder, 2007). The rest is shaped by factors such as social circumstances, environment, genetics, lifestyle, and self-care — things that do not happen in healthcare but in everyday life. This means that the vast majority of health is created by us patients ourselves, in our own lives, every day.

Patients are indeed the most underutilized resource — but not primarily for healthcare. We are an underutilized resource for our own health. And to be that resource, we need knowledge — not just the medical facts that are sometimes handed out at the time of a diagnosis, but a deeper and more useful kind of knowledge: about our own condition in relation to our own lives, about what the research actually says and how it can be interpreted in light of our own situation, and about how we as patients can become more competent and independent actors in our everyday lives. This kind of knowledge does not emerge on its own and cannot be expected to come solely from brief clinical encounters. It needs to be built up systematically, with support, and in contexts where our own experiences are taken seriously as a legitimate source of knowledge. When we patients gain that knowledge, everything changes — not just how we manage our condition, but how we live our lives.

For this to be possible, participation in the clinical encounter is not enough. What is needed is for us patients to have access to relevant knowledge about our conditions, our bodies, and what we ourselves can do. Healthcare’s role then becomes not to make us better contributors to the system, but to give us the tools we need to live as well as possible with our situation. That is a crucial difference — and an important one.

One final note: Warner Slack was a pioneer in the use of digital technology in healthcare, and his statement grew from his hope that technology could help patients help themselves with their medical problems — that is, to be a resource for their own health, not for the system.