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Measuring happiness to give patients a voice

 

Happiness means different things to each of us. How we feel, and what makes us happy is individual. But everyone can agree that happiness is vitally important, that it helps us gauge how well we are doing in our lives – and decide what we can do to make our lives better.

What works for us as individuals can also work for us as a society. In recent years, there’s been a notable push to use happiness, in addition to economic indicators, to measure social progress and compare countries by how satisfied people are with their lives. Well-being has proven to be an effective method of finding inequalities between groups of people – and one which the public has quickly embraced. The UN’s popular World Happiness Report is now a powerful tool to help create policies to improve quality of life around the globe.

Could happiness also be used in health to measure the impact of diseases and find ways to improve patients’ well-being? That’s exactly what PsoHappy, LEO Innovation Lab and the Happiness Research Institute, the independent think tank focused on well-being, happiness and quality of life, set out to discover – with results that have made the world take a new look at one of the most common and widely misunderstood chronic diseases.

More than just a skin condition

Psoriasis is a chronic autoimmune skin disease, affecting some 125 million people around the world. While it isn’t life-threatening, psoriasis has been recognised as a non-communicable disease (NCD) by the World Health Organisation, putting it alongside other serious diseases such as cancer, heart disease and diabetes.  Incorrect diagnosis is common with psoriasis, treatments are often inadequate and the social stigma of the disease can have a devastating emotional effect on patients’ lives.

Frustratingly, this side of the disease has been largely ignored and people continue to think of psoriasis as “just a skin condition”. That leaves people living with psoriasis vulnerable, having to deal with the disease’s emotional impact without much of a social safety net – even the healthcare system doesn’t seem to care about their mental well-being.[1]

A new type of advocacy

Giving these people a voice has long been the mission of psoriasis advocacy groups such as IFPA, the International Federation of Psoriasis Associations. PsoHappy, the Happiness Research Institute and LEO Innovation Lab are working to take that advocacy even further.

“People living with psoriasis have never had a space where they could talk about the impact the disease had on their lives”, LEO Innovation Lab CEO Kristian Hart explained. “With PsoHappy, we wanted to give them exactly that because psoriasis is much more than a skin disease”.

PsoHappy’s reach is unprecedented – to gather happiness data, we surveyed 120,000 psoriasis patients in 184 countries worldwide through our web-based and mobile application. This enables us to compare happiness measurements for psoriasis patients with the benchmarks found in the World Happiness Report, the United Nations’ annual survey of the state of global happiness. The World Psoriasis Happiness Report 2017, published in October last year, highlighted the negative impact psoriasis has on well-being.

Happiness in the spotlight

For more than 100 years, we have measured social progress by economic indicators such as GDP. But over the last decade, a new way of understanding progress has emerged – one that looks beyond economic inequalities and measures how people feel about their lives. After all, our general well-being depends on more than just wealth – self-esteem, aspirations, health, work and civil status factor in as well.

This new metric catapulted into the public eye in 2011, when the United Nations passed the resolution on happiness and enshrined happiness as a “universal goal and aspiration”. The same year, the Organisation for Economic Cooperation and Development (OECD) included life satisfaction as a development parameter for its member countries – establishing subjective well-being as a valid measure that could be used to inform policy makers and citizens. The ultimate goal of public policies, the OECD concluded, was to improve the quality of our lives. As a way of measuring the progress of society, happiness had arrived.

Happiness has also captured the public’s imagination – the country rankings in the World Happiness Report are now eagerly anticipated and widely covered by the media. For 2017, Norway, Denmark and Canada were among the world’s happiest countries, while Tanzania, Burundi and Central African Republic placed last.

That these happiness measurements have become part of the public debate is heartening since they help us see inequalities that need to be addressed. No matter where we’re from, we all want to improve our quality of life.

How happy are you?

The PsoHappy study is built squarely on this foundation – but narrows the focus to explore the impact of a specific chronic illness on well-being, and benchmarks the results against established national averages. As John Helliwell, one of the authors of the UN’s World Happiness Report, notes in a foreword to the World Psoriasis Happiness Report 2017: “This study, and the ideas and organisations behind it, are path-breaking applications of happiness research to support better lives for all, and especially those most in need.”[2]

So how does PsoHappy measure something as subjective as happiness? Employing methodology used by the United Nations and the World Gallup Poll, the PsoHappy survey focused on themes such as disease severity, disease burden, treatment burden, general life worries and behaviors, as well as assessment of the healthcare system.

The findings published in the World Psoriasis Happiness Report benchmark the happiness levels of people with psoriasis against country averages – making it easy to spot inequalities and assess the impact of the disease.

As John Helliwell notes, “By collecting well-being data comparable to those available for the broader population, the study team is able not only to provide an estimate of the human consequences of the condition, but to show which aspects of life are most affected by the condition, and how much their happiness is thereby affected”.[3]

Insights into the happiness gap

When reading the World Psoriasis Happiness Report, one thing is starkly obvious: psoriasis has an impact on happiness that can’t be denied, swept under the rug or ignored any longer. The happiness levels of our fellow citizens living with psoriasis are consistently lower – up to 30% lower for people living with severe psoriasis in some countries.

The report also makes it clear that using happiness methodology can provide the kind of concrete findings that policy makers  within health can readily understand and act on.

For example, the PsoHappy study found that the impact of psoriasis is greater for women than men. While men with severe psoriasis reported 11.3% lower levels of happiness, women living with severe psoriasis were 18.5% less happy and reported higher levels of stress and loneliness than men.

Loneliness and social isolation are very real for up to a third of all people living with psoriasis. Levels of loneliness varied across countries, from 21% in Portugal to a stunning 48% in the UK.

Trust in the healthcare system is also a concern. 48% of respondents felt that their healthcare professionals didn’t fully understand the impact of psoriasis on their mental well-being. These respondents experienced happiness gaps of 21% compared to national averages. On the other hand, those who felt their physicians understood the impact experienced much smaller happiness gaps of only 3%.

Toward social change

These findings have already generated considerable attention in the media, with mentions in publications ranging from the Huffington Post to Harper’s Bazaar. Clearly that’s a step in the right direction for raising awareness of the impact of psoriasis – one that could ultimately lead to changes in health policy to improve the lives of those living with the disease.

As IFPA noted when the World Psoriasis Happiness Report 2017 was published: “These data points can be a key driver in broadening the global conversation around the impact of psoriasis beyond scientists and clinicians, and will allow advocacy groups to facilitate a more compelling conversation with policy makers”.

IFPA specifically commended PsoHappy for applying happiness survey methodology to psoriasis, adding that it would “finally draw attention to the real-life impact that a common chronic, serious disease can have on people’s lives on such a global scale”.

Meik Wiking, CEO of the Happiness Research Institute, sees an even bigger picture. “We believe that we should measure what matters. And what matters to people is their quality of life, their well-being and their happiness. We are trying to put well-being at the core of healthcare, and essentially put care back into healthcare. And that is our overall ambition going forward”.

Following the success of the first PsoHappy study, LEO Innovation Lab CEO Kristian Hart also envisions a larger role for happiness research within the health space: “With this World Psoriasis Happiness Report, we are demonstrating our leadership within health tech, because we will be looking at more diseases in the future”.

And that means that more patients with chronic illnesses will finally have a voice to help change their lives for the better.

 

 

[1] World Psoriasis Happiness Report 2017, pg. 44

[2] World Psoriasis Happiness Report 2017, pg. 7

[3] World Psoriasis Happiness Report 2017, pg. 7

 

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