Understanding the wider implications of mental illness
Lee has been instrumental in creating an International Working Group with patient groups and policy makers to work towards a more holistic view of treating schizophrenia. He is also helping to build a global network for improving Alzheimer’s care.
I have looked at diseases and their impact on people from many different perspectives. I began my career as a research scientist in microbiology and then went on to run a World Health Organization (WHO) collaboration centre in Kenya for viral hemorrhagic fevers like Ebola and Rift Valley fever. My wife and I helped to set up an early response and diagnostic network in East Africa for these diseases, which remains active to this day. Drawing on this experience, I worked as an adviser to the WHO in Egypt, focusing on regional preparedness to support measles eradication. From there, I became the Head of Research and Information for the UK Multiple Sclerosis Society, where I was able to bring about fundamental change to research funding and create a new programme focused on non-medical intervention to improve quality of life for patients.
I joined Roche in 2010 working in Global Public Policy and a year later I found myself in a new role to support our efforts to improve treatment for people living with schizophrenia.
Most of us think of schizophrenia in connection with the ‘visible’ symptoms: hallucinations, delusions and self-harm. In fact, the ‘hidden’ symptoms of schizophrenia – lack of motivation, speech problems, withdrawal from people – can be even more debilitating over the long term, leading to isolation and exclusion from family and society.
Roche was developing a treatment to address these hidden symptoms of schizophrenia. From the outset, however, it was clear that treatment alone would be unlikely to provide meaningful change and improve everyday living for people with schizophrenia. My goal as Senior International Public Policy Manager was to bring together policy experts and mental health associations from around the world, so we could understand the needs of people affected by schizophrenia. We learned that real benefits would come when society provided the support and opportunities which could only be achieved by many different stakeholders working together.
A milestone in our international collaboration was the critically acclaimed report, made possible by a grant from Roche, ‘Schizophrenia: Time to Commit to Policy Change’. This report brought together leading psychiatrists and advocacy groups to provide concrete recommendations for policy change.
Collaborations with patient organisations from Europe, the United States, Canada, Australia, Japan, Hong Kong, South Africa and Brazil, resulted in the formation of the International Working Group (IWG) on Social Inclusion and Schizophrenia. Many of these organisations had little, if any, regular contact with each other, yet all shared a common goal.
The aim of working together was to identify how policy changes could respond to the needs of people affected by schizophrenia and introduce new initiatives to improve lives.
We found that the ‘hidden’ symptoms of schizophrenia could be tackled by increasing social inclusion and challenging stigma. This is also true for managing many other types of mental illness. By sharing experience we can identify opportunities to integrate people with schizophrenia into society. This includes education and jobs that help individuals regain self-esteem, independent living and social interaction.
Personal experience has helped shape my thinking about social inclusion. I have a 12-year-old daughter with autism and it remains a struggle to convince local authorities to provide support to include her in everyday activities like mainstream schooling. My wife and I want her to have the same opportunities as everyone else to develop her talents and lead a full and independent life.
By working to overcome the stigma associated with mental illness, we can provide opportunities for inclusion into society.
There were high hopes for a new Roche treatment for schizophrenia. Unfortunately, in the final stages the trials failed to demonstrate sufficient efficacy and were halted early in 2014. Nevertheless, the studies did generate valuable data that were openly shared with the medical community and provided insights for developing future treatments and the design of clinical trials.
Even though the clinical programme ended, Roche continues to support social inclusion and the efforts of the International Working Group. As the IWG knows, changing policy is a lengthy process and this is just the beginning.
As Roche develops its presence in the field of neuroscience, we are building on the experience gained from the International Working Group. Recently, I have started to develop a dementia forum with leading patient associations in the field of Alzheimer’s disease. The insights being gained from this partnership with patient groups are shaping the way we conduct research and development as well as policy objectives across the Roche neuroscience portfolio, which includes multiple sclerosis, Alzheimer’s disease, autism and Down’s syndrome.
Effective treatment requires a vision of the whole person and all the factors influencing an individual’s quality of life.
In all of these areas, social inclusion plays a crucial role. Effective treatment requires a vision of the whole person and all the factors influencing an individual’s quality of life. Whilst medical treatment is important, it is just one part of the solution.