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3/52 Why we don't need patient empowerment. What we need is patient agency. Some thoughts.

'Patient Empowerment' must be one of the buzzwords of the day. As patient advocate it's definitely one of the standard topics one gets invited to talk about. So after something close to 10 years in patient advocacy- it's a bit hard to say when it started as very much like most of my colleagues, I somehow got sucked in. And before you know it, someone calls you a patient advocate. Before you consider that yourself and before you feel you actually know what that is supposed to be, a patient advocate- let alone ready to fill that role. It then takes a while to realise that that is *precisely* the point.

Most of us ended up in patient advocacy because of a personal experience with disease, in my case it was my husband's death from Melanoma. It is something in that experience that upset us so much that we are willing to go to great length and spend incredible amount of time and personal resources on seeing change, seeing improvement. The specific trigger differs between people- I could not believe we actually randomise patients in clinical trials to therapies we know not to work, all under some fake pretence of 'Science' until my husband joined such a trial- and anything else came from that experience. Others only have a vague but considerable feeling of unease, of injustice, but all of it is about the need for change.

Change is about building something new, something better. It is about inventing a better future that will benefit those affected today and those to come after us- those lucky enough today not to know what the future holds for them. And when it comes to change, concepts and words matter. They are like the essence of our values, our assumptions, the way we look at the world. And it turned out that when my MPNE colleagues and I were working on V2A2, a tool for effective patient information for Share4Rare, the second Horizon2020 project our network participated in and both deserving some extra blogs another time- that the term Patient Empowerment sat very uncomfortably with us.

What is the issue with Patient Empowerment? It's in the assumptions and the perspective. As 'Patient Empowerment' comes with a number of hidden assumptions: That patients are powerless, therefore need to be given power. That it is on the empowerer to hand over that power. And by consequence, that it is the empowerer to decide how much of that power to hand over and in which shape and form. And- who gave the empowerer the power to do so in the first place?

Fact is that in most situations- demanding equipoise-respecting clinical trials, access to your health records, a truly independent 2nd opinion, medical research that actually addresses medical need- are not about the assumption of transfer of power. They are about exerting one's rights. A hospital that is refusing to release a patient's data back to the person, usually using GDPR as an excuse, is simply violating laws. And it's not talk about patient empowerment that will fix that.

While the former were rather situations obstructing a patient's and citizen's rights, knowledge and education is an area of assumptions and attitude. The number of times we get to hear 'patients don't want to know this' or 'this is too difficult for patients' or even 'patients don't have to know this' is staggering. Considering the ease with which high- quality medical and scientific information is accessible today, it is also remarkably out-of-touch. Thanks to the internet, diverse social media channels and the enthousiasm of many who believe that education should be open and easily accessible- see MOOCs- and even entertaining and fun- see YouTube and TikTok- it was never easier to educate yourself on any topic you could be interested in, in a format that suits your personal learning style. Medical society such as ESMO and ASCO offer fellowships for patients and patient advocates to attend Scientific Meetings to learn. Open Science is gaining traction. Funders being to demand that the results of the research they fund are openly accessible.

We therefore felt that increasing patients' agency, increasing the range of a person's options, giving them choice and the ability to choose, was a concept that was more respectful towards patients.

Agency is about assuming personal responsibility- and the realisation of the need to do so. With options available, it is on the patient to decide how much or how little responsibility they are willing to assume. With so many opportunities to learn for example, it's on the individual to decide what and how much they want to know and what to do with that knowledge. And that it is their decision to take as there simply is no authority granting that type of permission, or to hand them the power to do so. It's about the realisation that they already hold the power- and that the challenge is in exerting it and taking responsibility for the consequences, not in having it.

The difference between patient empowerment and patient agency thereby lies in how we think about patients. Patient empowerment assumes that someone else has the ability, capacity and moral right to hand over power to a - usually helpless, gratefully receiving- patient. Agency sees that a patient has the opportunity and ability to chose from a range of options. Systems are critical in ensuring equal opportunities but it is the patient who decides how much- or how little- responsibility to assume. And to choose. Or to let someone else choose. It's the difference between thinking of oneself as the helpless victim of circumstances. Or as of someone making best possible decisions in a bad situation- a situation one more often than not ended in by simply having bad luck.

Bettina Ryll

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