A major theme of my work last year was that it’s time to create a science of patient engagement (see blog posts) – a rigorous inquiry into what patient engagement is, what factors (parameters) increase it, which ones diminish it, develop some hypotheses that researchers can test. This was the theme of my visit to the Mayo Clinic as Visiting Professor in Internal Medicine in March and my tenure as NEHI’s Patient Engagement Fellow.
A science needs practical definitions. The Structure of Scientific Revolutions notes that until a field has an agreement on what a concept means, the practitioners in the field literally have nothing in common to talk about. I’ve seen that myself, when people talk about empowerment but the field goes nowhere.
It’s time for definitions.
Fortunately, a useful definition of empowerment exists.
The definition of empowerment in the slide above is excellent for our movement: it lets us get a grip on specifically what change we seek, and break it down into components everyone can understand. Thanks to Sara Riggare and Fulvio Capitanio for this, as explained below:
increasing the capacity
of individuals and groups
to make choices
and transform those choices
into effective actions and outcomes.
Breaking it down:
- Increasing the capacity: the idea here is to make people more capable. So, we can look at an effort and ask, “Is this designed to make people more capable? Is it working? Or, does it decrease people’s capacities?”
- When a toddler (for instance) has no capacity to understand an issue, paternalistic care is necessary. As the toddler grows, autonomy is increasingly valid, and paternalistic care should pull back; ultimately it becomes just plain wrong to keep capable people controlled.
- of individuals and groups: as described below, this is the definition the World Bank uses in developing nations where the citizens – as individuals and as a community – have no concept of how to run a government, build an economy, etc.
- to make choices: If you can’t make up your mind (or aren’t allowed to have an opinion), you’re powerless … disempowered. This includes not just individual choices but the capacity to set priorities.
- and transform those choices into actions: if you’re unable to act on your choices, you’re clearly powerless
- and outcomes: and if those actions don’t produce results, you have no power.
Time after time this definition has proved useful for all kinds of policy questions. Example: patient access to health data:
- If I don’t have access to my medical records, it clearly decreases my capacity to make choices and produce results. Voila: we can easily see how this disempowers me – and keeps the data-hider in power. Not okay. :-)
- If I do have access to information on my health status, through digital devices (e.g. if a person with diabetes has a glucose monitor, or if a heart patient has an AliveCor), we can understand how I have more capacity to act effectively: I am empowered to achieve my desire to stay out of medical trouble.
Note that this definition is very different from the sloppy common use of the term, e.g. “Our employees are empowered to authorize product returns.” That only means employees have permission to do something …. all the power still lives with the person who grants that permission!
Edit next day: Hat tip to Casey Quinlan, who spotted this perfect example on Medium.com: When are we empowering users, and when are we just being lazy? Excerpt:
To what extent has the rhetoric of empowerment in digital healthcare been diluted to the point that when we speak of “empowering users”, what we really mean is “let’s get the patient to do our job for us”?
Patient empowerment is about increasing patients’ capacity to produce results on what’s important to them.
Who pointed out this definition?
Patients. At a patient-heavy conference.
I first heard this definition at the 2013 World Parkinson Congress in Montreal, which Swedish PhD candidate (and Parkinson patient) Sara Riggare talked me into attending. Boy was that worth it – as I blogged at the time, 20% of the audience was actual patients and caregivers – people who truly have “skin in the game” about whether the conference does anything useful.
As I worked on my slides that morning Sara told me that this definition had been used the day before, by another patient: Fulvio Capitanio of Unidos Contra el Parkinson.
Why, in six years of attending conferences, has this definition never come to light (before or since)? Simple: conferences are generally produced by people talking about the problems patients face, not by the people who have the problem. This is the rationale of @LucienEngelen’s #PatientsIncluded movement:
The world looks different
when viewed through the eyes
of the people who have the problem.
I call patients (the ones with the problem) “the ultimate stakeholder.” The idea’s not new, for heaven’s sake – consider the 2002 book from the Picker Institute, Through the Patient’s Eyes.
Empowerment is a universal social issue.
This is precisely analogous to another movement that was all about empowerment: feminism. When women were famously kept “barefoot and pregnant in the kitchen” it was no surprise that they ended up not knowing much about business, technology, government etc, yet their oppressors misinterpreted that too-common reality, saying it was self-evident that women could not do such things.
Women got empowered and became capable when the oppression stopped, education became available, etc. Of course, in some cultures the oppression continues – the point here is what it takes to empower people: before you judge people’s capacity, try giving them information and letting them gain some experience at making decisions and seeing how they work out.