PARADISE is the EU funded project under the Seventh Framework Programme (FP7).
The objective of PARADISE is to develop and test an innovative approach to collect clinical data on the psychosocial difficulties that people experience when they suffer from brain disorders. The key to this approach — which we call ‘horizontal epidemiology — is that the problems people have to deal with are not linked to the specific diagnosis of the condition they have but are actually problems that people with very different brain conditions — we look at dementia, depression, epilepsy, migraine, multiple sclerosis, Parkinson´s Disease, schizophrenia, stroke and substance use disorders — have in common. If we are right about this, this way of collecting information would profoundly change how we organize and deliver services to people with brain disorders across Europe, improving their lives and life opportunities.
PARADISE is broken down into interconnected Work packages (WPs) that form an integrated research strategy.
WP1 starts off with literature reviews on psychosocial difficulties and their determinants, followed by focus groups to understand psychosocial difficulties from the person’s own perspective. Information about the difficulties people actually experienced is then compared with what is described in the literature about the nine brain disorders we consider. The next step is WP2 in which standard statistical techniques are applied to harmonize the information gathered in WP1 with data derived from the World Mental Health Survey and other relevant international neurological and psychiatric surveys. The idea here is to identify those commonly experienced psychosocial difficulties that explain the most about the lives and problems of people with different brain disorders.
Once these preliminary explorations are well under way, in WP3 a new protocol for collecting and documenting psychosocial difficulties will be drafted. This protocol is a new and innovative approach to the preliminary step of treatment planning and the organization and distribution of health and social care resources to people with brain disorders. This harmonized protocol will undergo close scrutiny by European experts, including in particular representatives of patients’ groups.
In WP4, training materials will be developed and train-the-trainer programmes conducted to prepare health professionals to collect information on psychosocial difficulties in clinical practice. By the end of this work package, it is anticipated that the harmonized protocol will be routinely used to document psychosocial difficulties for up to 80 patients for each brain disorder under consideration.
Finally, in WP5 the data collected during the testing period will be gathered together and analyzed to determine whether the harmonized protocol lived up to expectations in determining the incidence of specified psychosocial difficulties across the nine brain disorders. Statistical models and techniques will be used to show that ‘horizontal’ documentation is feasible and that the collected information is valid and sensitive to change over time. Lastly, in line with the overall objective of PARADISE, a case will be made that data restricted to the diagnostic criteria for brain disorders do not allow us fully, or consistently, to explain the dynamics of common lived experiences of psychosocial difficulties associated with brain disorders. This would support our conclusion that a data documentation strategy, at the national level, that ‘horizontally’ harmonizes and integrates information about psychosocial difficulties experienced by persons with brain disorders provides a more useful and robust portrait for intervention planning and other relevant health systems and policy purposes.
In the last months of PARADISE all of the partners will convene a stakeholder conference – composed of individuals suggested by the partners, including patient group representatives and supplemented by appropriate members of the European and scientific and policy communities – during which a report and its recommendations will be discussed and revisions suggested (WP6). A dissemination plan, relying on a variety of dissemination modes and tools, and devised collaboratively and after wide consultation, will then be implemented (WP7).