Junto Profile: PsoHappy
Caring for patients with chronic conditions is challenging for a multitude of reasons. The lack of a sustained, cure-all treatment makes chronic conditions taxing for both patients and clinicians alike. While many people understand the physical turmoil component of a chronic condition, the emotional turmoil is far more difficult to qualify, and quantify.
Located in Copenhagen, Denmark, LEO Innovation Lab, founded by LEO Pharmaceuticals, looks to understand chronic skin conditions in totality, not just in their physical manifestation. In tandem with other pharmaceutical companies looking to move ‘beyond the pill’, LEO Innovation Lab designs holistic digital-tech solutions that provide patient care in ways medications can not. Some of their innovative digital health products include Studies&Me, which looks to digitize clinical trial recruitment, and Klikkit, a Bluetooth button and mobile app that help patients monitor and follow treatment plans.
In order to effectively address unanswered patient needs, LEO Innovation Lab decided that they needed to hear from patients themselves. Through their digital application, PsoHappy, LEO Innovation Lab surveys patients with chronic skin conditions to understand the mental impact of such conditions, such as psoriasis. Using this data, LEO Innovation Lab has generated two World Psoriasis Happiness Reports, which quantify the mental impact of chronic skin conditions. The reports generated startling statistics as to the true global costs that chronic conditions inflict on society.
When we first heard about the work that the LEO Innovation Lab was doing in conjunction with their digital health application we were intrigued by this example of how a piece of health technology could be harnessed for research. Work has been done before around the idea of researching applications themselves to test their effectiveness, but this was one of the few times where we came across a piece of work that was harnessing the power of the application for a market research itself.
We decided to speak with Catalina Cernica, Director of the PsoHappy project at LEO Innovation Lab, to understand the accomplishments of PsoHappy, the findings of the latest World Psoriasis Happiness Report, and where LEO Innovation Lab is looking to grow their digital health platform.
Junto Health (JH): How did you come up with the idea for PsoHappy? What was the impetus?
Catalina Cernica (CC): The idea was formed during a workshop on mental health where Meik Wiking, the CEO of the Happiness Research Institute, was invited to give a talk. We were looking for new ways to measure the impact of digital solutions, like the ones we are developing in LEO Innovation Lab, have on the well-being on patients. Without maybe articulating it like this from the beginning, we were challenging the classic approaches to patient outcome measures in chronic conditions.
And, like they say, the rest is history. Applying happiness methodologies to this scale and extend to a chronic condition is a first of a kind and we have learned - and hopefully - we have showed a lot about what this approach could contribute to policy development, patient advocacy, healthcare systems education and resources prioritization.
JH: Can you talk a little bit about how you designed your survey?
CC: The surveys have been designed in collaboration with our partners at the Happiness Research Institute and are a combination of validated methodologies that explore different aspects of well-being, like loneliness and stress, and original methodologies that we developed specifically for exploring areas like living with comorbidities or the relationships with the healthcare professionals.
The survey development is a continuous process of validating the insights and the methodologies; we normally start with a number of hypothesis or areas we already know we’d like to explore and then, based on the initial findings data shows we refine or develop follow-up surveys to better understand “what makes happiness for people living with chronic conditions”
JH: Why conduct surveys through a mobile app? Why is this a better research method than more traditional forms of surveying? Are there any other groups doing this?
CC: The surveys can be taken on any device that can connect to the internet: desktop, tablets or mobile phones. Our approach is, however, mobile-first, as this gave us a clear framework of usability to work within and expanded the time frames within people can take the surveys: anyone can find a few minutes on their commute to take a short survey and reflect about their lives with psoriasis.
JH: Can you briefly summarize the findings of your most recent World Psoriasis Happiness Report?
CC: WPHR 2018 has highlighted several insights related to the cost of psoriasis and the inequalities created by living with psoriasis in the surveys 21 countries:
Psoriasis drives a significant loss in productivity, in turn creating a financial cost to the nations included in the study (calculated using the human capital approach):
In the US, the cost of self-reported psoriasis is estimated at $30bn (per year). This amounts to $19m per 100,000 people employed or 0.16% of GDP.
In the UK, the cost is $2bn, which is $8m per 100,000 people employed or 0.09% of GDP.
In Denmark, the cost is $574million per year, which is $20.2m per 100.000 people or 0.2% GDP.
Poor mental health is the strongest predictor of lost productivity: respondents who reported to be highly impacted by depression or anxiety said they’ve missed approximately four times more work hours than those who reported to be not at all impacted by these conditions.
Poor mental and social well-being are stronger predictors of unhappiness than the four key risk factors most commonly prioritised in the understanding of NCDs (tobacco use, physical inactivity, unhealthy diet, and the harmful use of alcohol). Poor mental health is diffused throughout various lifestyle factors for people living with self-reported psoriasis, accenting that the condition is experienced mentally and socially first and foremost.
People with psoriasis in the US are 10 times more likely to live in misery than Americans in general.
Countries, where a higher percentage of respondents felt that their doctor prioritized the impact of psoriasis on their mental health, tended to perform better in regards to happiness measures.
JH: Now that you have completed your second World Psoriasis Happiness Report, what action items are next on the agenda?
CC: We are looking to build further on the happiness agenda and forge partnerships in other chronic disease areas to highlight the impact they have on people’s well-being and happiness. We are actively looking to engage with key institutions and policy makers to develop new frameworks that are better suited than traditional health-related quality of life measures to become an active part of the dashboards health ministers and institutions use to prioritise resource and serve their patients. And we are going to continue to advocate for a higher level of attention given to mental and social well-being in all chronic conditions, as key factors that drive happiness.
JH: From your vantage point, how has digital health transformed the lives of those living with chronic conditions?
CC: When we say “chronic conditions” people think of overweight and bad lifestyles. So there has been a lot of technological progress in this space - a lot of apps and tech solutions for dieting, living more actively, measuring and controlling key biomarkers, with different levels of commercial success. In my opinion these approaches lack a holistic view of what makes people happy and what influences their levels of well-being in the context of their lives as a whole. The companies who focus only on calories or step counting are guilty of the same sin we accuse healthcare systems of: reducing and oversimplifying people to one disease or one mental and health state.
JH: What feedback have you received regarding PsoHappy? (Patients, medical community, mental health professionals)
CC: One of my favourite messages we got from the participants in the survey was a thank you note from a woman who found taking the survey very insightful into her own mental health in relation to her psoriasis. The fact that we help people living with psoriasis reflect on what it means to their everyday lives and how they can manage better is very rewarding.
At the institutional level, the highlight of this year was in May, when the International Federation of Psoriasis Associations (IFPA) organised an event around NCD’s and Happiness: Mind the Gap. It highlighted the need for a different framework in measuring what matters for people living with chronic conditions like psoriasis and it showed great pioneering work from an international association in adopting a new framework for looking at what it means to live with psoriasis.
The insights have a wide applicability and, from the initial feedback we got, we are keen to further explore and push the agenda of mental and social well-being for people living with chronic conditions, from supporting advocacy efforts to building arguments for better inclusion of mental health services in relation to dermatology.
JH: What other digital health projects is LEO Innovation Labs working on?
CC: Our other work focuses on AI-assisted diagnosis of skin conditions through a platform called Imagine.
Imagine is a digital healthtech platform that brings artificial intelligence (AI) to the smartphone to help diagnose skin disorders and empower patients to stay on top of their condition.
Driven by the vision of universal access and enabling value-based healthcare, Imagine is designed to support both patients and doctors to arrive at the right diagnosis and best-suited treatment faster than the lengthy trial and error journey patients often experience today.
Imagine’s AI, developed with expert dermatologists, can currently identify psoriasis with an accuracy of 91%, while Imagine’s skin tracking app is empowering thousands of people all over the world to better understand how new treatment or lifestyle changes affect their skin.