Patient and Family Advocacy: A Valuable Element of Healthcare

Health inequities are a global concern—not only across countries but also amongst the populations within them. These inequities are primarily reflections of the social determinants of health—unequal access to healthy and safe food, water, schooling, housing, and employment. As such, health inequities feel almost impossible to address. These conditions influence one’s likelihood of falling ill and access to high quality, culturally, emotionally, and physically accessible care. They feel big and wicked—impossible to address.

Breaking Down the Wickedness of Health Inequities

The conditions within which we live influence our health behaviour, yet they do not completely determine our behaviour. And although our circumstances influence our health journey, our behaviour and our responses to our health can as well. For example, two people in the same circumstances may respond to a health scare completely differently. One person may ignore it, whereas the other person may call around to find a clinic that will help them, despite their lack of comprehensive health insurance. One person may not follow up when their lab results do not come in; another may send an email to find out what their results are and what happened to the promise to contact them by a certain time.

Some people naturally advocate for themselves and their family members. They seek care and knowledge; they feel at least some agency regarding the trajectory of their health. Other people are not natural advocates, either because they do not prioritize their health (or have other more pressing priorities), do not have the skills or acumen to act as health advocates, or do not believe that their efforts will amount to much.

Addressing health inequities through increased advocacy

Is there a way to transform these non-advocates into advocates, thereby helping address health inequities? What might be the best approach? It likely depends upon why an individual does not advocate. If we get the “why” wrong, we will build a wacky, misaligned approach that fails. But how do we determine why some individuals don’t advocate, or don’t advocate enough?

If we use the Theoretical Domains Framework as a starting point, it tells us that there are 11 possible “whys” regarding this lack of advocacy (1). They range from lack of knowledge or skills to social influences, to doubts that advocacy impacts much of anything. Presumably for each person, the whys are different, but they may cluster. For example, we know that younger populations tend to be more heavily influenced by their peers than older populations, so social influence may be a more significant barrier for them (2). We also know that women tend to have higher health literacy than men (3), so women may have fewer knowledge barriers than men. Regardless, we can’t promote advocacy until we deeply understand the barriers to advocacy.

To build a culture of sustainable, thoughtful advocacy, we need to truly understand the barriers to advocacy. Otherwise, we will build programs that go in one ear and out the other, completely coming to naught. Tools like the Theoretical Domains Framework can help us understand the barriers to advocacy, so we can build thoughtful solutions and start addressing health inequities from the bottom up.

Insights. Strategy. Execution.

References:

(1) Michie S, Johnston M, Francis J, Hardeman W, Eccles M. 2008. Applied Psychology, 57(4):660-680.

(2) Knoll L, Magis-Weinberg L, Speekenbrink M, Blakemore S. 2015. Social Influence on Risk Perception During Adolescence. Psychological Science, 26(5).

(3) Clouston, Manganello, Richards. 2017. A life course approach to health literacy: the role of gender, educational attainment and lifetime cognitive capacity. Age and Ageing; 46(3):493-499.