The Economist (Intelligence Unit) – Creating Healthy Partnerships (2019)

42

THE ROLE OF PATIENT VALUE AND PATIENT-CENTRED
CARE IN HEALTH SYSTEMS

groups is striking in this regard: for the former in our patient survey, almost all said that patients are

involved in the creation of care plans and in making decisions throughout the care process; for the

latter, almost none did.

Indeed, in some ways medical experts remain opposed to greater patient involvement. Ms Sofia recalls

that when she began in advocacy several years ago the doctor then treating her daughter, who has

epilepsy, “was very disappointed and kind of angry because I was interested in subjects such as epilepsy

research. He thought I should only help people by promoting family support initiatives.”

For Ms Sofia, however, the challenge is not simply changing clinician attitudes but encouraging patient

engagement. She sees the need to create the kind of community of interest that helped so much with

HIV/AIDS advocacy. Key barriers, she explains, are stigma and lack of progress. About half of those with

epilepsy, she estimates, are well controlled with current medication. In her experience, “those people

do not want to talk about their disease.” Those who are not well controlled, however, feel abandoned

and the lack of any real medical advance in the field in recent decades leaves them with “a feeling of

surrender”.

She is optimistic for the long term but does not see in Europe currently a substantial epilepsy advocacy

community. The most important shift to bring this about “must happen at the level of the patients

themselves. They need to become more engaged, more willing to be involved. This means becoming

able to recognise and promote their perspectives.”

The problem is far from unique to epilepsy. Of infectious diseases, tuberculosis is responsible for most

deaths in the world currently. The activist community for it, however, suffers from a tendency of those

infected, once cured, to be unwilling for people to know that they had ever had the disease because

of the stigma attached in many countries. Indeed, many of those involved in tuberculosis patient

advocacy previously worked for HIV/AIDS groups before deciding to focus on a different disease.^82

In general, Mr McColl believes that the primary need for successful patient advocacy is for people

to embrace their identity as a person with those conditions, “to find folks who are willing to push as

a patient and bring others together.” For HIV/AIDS, the threat to life and overlapping identity with

the LGBT community eased the way, he adds, and with other conditions it might be more difficult.

Nevertheless, “passionate and organised voices” are the key to getting policymakers to respond.

Make passion less necessary

This has a couple of implications for patient-centricity. The first is that, without engaged patients, its

value will be inevitably be limited. The solution, though, is certainly not to force individuals to man

the barricades on behalf of their condition. Such zeal may have been the route to success for some

conditions like HIV/AIDS in the past, but that necessity reflects the failings of a paternalistic medical

systems rather than a desirable winnowing process to weed out diseases that deserve less attention.

Instead, patients, families and health systems need to collectively move to a point where partnership

for all conditions is the expectation rather than the exception. In such an environment, the necessary

82 Economist Intelligence Unit, Ancient

enemy, modern imperative: A time for

greater action against tuberculosis, 2014.