One view of ‘patient engagement’ is that it is about people taking greater responsibility for their health. This take on patient engagement coincides with the rise in a blame narrative in which people are increasingly told that their health is the fault of their lifestyle choices. Cancer is often referred to as the silent killer. If we are to unsilence cancer, we should not be blaming people but rather encouraging people to engage. A blame culture is one of inequality and mistrust. A rights-based approach emphasising dignity and non-discrimination offers a way forward for an equal, trusting and informative engagement between people and health practitioners.
As a researcher in the field of health and human rights who was recently diagnosed with cancer I felt anything but an expert and empowered patient. Nonetheless my experience as a researcher strengthened my resolve to act, even when I felt least able. Patient engagement has for several years increasingly come to fit the description of ‘responsibilisation’ (Osborne), in which the fundamental right to health is eroded and state obligations are increasingly replaced with a focus on individual responsibility. I reflect here on my engagement with health practitioners as a means of showing the dangers of patient engagement becoming patient blaming.
Accountability and trust
July 2014. Is that little mole on my right leg looking darker? No, it is normal. I know my body. I am the ‘expert patient’. And, because of a previous negative experience, I don’t trust my General Practitioner (GP). In November I hear there is a new GP at the medical centre we are assigned to. I decide to get a check-up. He grunts, looks irritated and asks: what do you want me to do? Deep breath, I’m inwardly shaking now. Scared of challenging him. I say I want a dermatologist appointment. He consults his computer screen again and sighs. I hurriedly add I’ve had treatment before. Ok, he says. I feel relief as he starts the paper work.
As a human rights worker I inform people they have the right to available, accessible, acceptable and quality health care and that State Parties have the obligation to protect, respect and fulfil the right to health, including the determinants of health. Participation is vital to the right to health and I work with civil society organisations to explore how they can use their voice to hold the State to account. Yet, here I was, first, not engaging with health services because of my lack of trust and then feeling anxious to ask the GP for the referral I felt I needed.
The implications for patient engagement: If patient engagement is simply about patients taking greater responsibility for their health, health practitioners need to be more open to building a trusting relationship. If patient engagement is also about people holding the State to account, more needs to be done to facilitate this participation and accountability. A trusting, equal, relationship is required for participation and accountability.
Access to information
February 2015. “I have bad news.” The world swims before my eyes and time slows. “You have malignant melanoma”. I switch from being the expert patient to the confused patient. Shakily I reach for pen and paper. I know ‘good’ patients take notes. While we wait for an appointment time with the surgeon I use my smartphone to find information. Seven days later we see the surgeon. She is crisp, clear and encourages me not to read too much. I remain strong and ask my questions. What were these questions? Did you get answers.
I knew so little. I did not know what questions to ask, who to ask and moreover, how to manage the information that I did get. Part of the right to the health is access to information. The health practitioners mediated my access to information by language (I am an English speaker in a non English speaking context) and the Internet filters further information. I did find useful information on cancer charity websites including guidance on what questions to ask the health practitioners. I used my access to a University library to browse academic journals but shied away from reading articles in depth. That level of detail was too much information at that stage. So the health practitioners were right about ‘not reading too much’. But it was important that I had access to all the information and then I could decide for myself what to filter, rather than someone deciding for me. The most useful information source were those that listed a few key facts and then linked to and referred to further relevant information.
The implications for patient engagement: Whether patient engagement means simply the patient taking on responsibility for care, or whether it means engaging with accountability mechanisms, in order for there to be a level playing field in the engagement dynamic, there needs to be equal access to information. The patient needs to trust the health practitioner and the health practitioner needs to be open with the patient about what information is available for the patient can access.
When I tell people it is a malignant melanoma, their first question is: “did you spend a lot of time in the sun?” It is about me, and the actions and decisions I took. Then when I tell them about the treatment they say: oh ‘they’ must have found it early, ‘they’ being the health practitioners. But no health practitioner was looking out for changes in my skin. It was me who identified the changes, went to the GP and insisted on a referral. The question about my exposure to the sun implies that I did something wrong. And the follow up response about the speed of the health practitioner’s reaction supposes that they were vigilant and provided all the solutions. I am responsible for (finding/locating/producing?) my disease. The health practitioner is responsible for curing me.
There is a growing narrative in the media and in government programmes of blaming the patient. We eat the wrong food, take too little exercise and spend too much time in the sun. We are told there are ‘good’ and ‘bad’ ways to fulfil these everyday activities. If we choose the ‘bad’ way, then we are blamed for our health outcomes. However, our choices are more complex and not all health outcomes are related simply to patient lifestyle choices.
The implications for patient engagement: Cancer is not silent. Patient engagement is about voices. It is also about the voices of healthy people who may become patients. An equal relationship between people and practitioners needs to exist in which information is freely shared about services and about accountability for services. Engagement is about an equal power relationship free of blame based on dignity and non-discrimination. For this, we need to see people’s engagement as not simply engaging in care, but also engaging with the State to hold the State to account to fulfil, protect and respect the right to the highest attainable standard of health.
About the Author: Maria Stuttaford holds honorary appointments at Cardiff and Warwick universities, UK and University of Cape Town, SA. She is a social scientist interested in the implementation of the right health, in particular how the right is used by civil society organisations.