Abstract: Neurodegenerative diseases such as Alzheimer’s and Parkinson’s are a truly global challenge. Most of these diseases remain incurable and are strongly linked with ageing populations. Dementias alone affect more than 7 million people in Europe and their care is estimated to cost €130 billion a year.
The EU Joint Programme – Neurodegenerative Disease Research (JPND) was established in 2009 as the pilot of the Member State-led Joint Programming Initiatives (JPI) to enable participating EU Member States to work together on the challenge of age-related neurodegenerative diseases, in particular Alzheimer’s. In the past five years, JPND has become a global initiative with 28 countries now participating.
JPND countries work together very effectively in a number of priority areas with activities moving forward in parallel, creating the necessary trust and alignment between the 28 participating countries.
In 2012 it was decided by the Management Board of JPND that Public and Patient Involvement (PPI) should be integrated in JPND joint actions. Since then experiences have been gathered regarding the special challenges that arise from collaboration cross border in implementing PPI:
- Differences in culture and tradition across JPND member countries must be considered. Cross cultural and social differences will have an impact on the way individuals with ND become visible and are accepted or stigmatized.
- Consideration should be given to the different starting points of JPND member countries in regard to implementation of PPI guidelines.
- The JPND initiative on PPI also considers the following issues – some of which are general to PPI in research – some of particular importance within research on Neurodegenerative diseases
Due to the insidious onset of neurodegenerative diseases and the enormous burden they inflict on patients, families and carers, there is a clear argument for active patient and public involvement in JPND research initiatives.
- Several issues, especially relevant to ND need to be taken into consideration for the implementation of PPI in specific ND including: cognitive impairment; rapid decline of health and function; lack of speech and other communication skills; dependency on carers and families; genetic risk factors.
- The appropriate levels of PPI in the various types of JPND research should be considered and investigated, that is PPI in basic, clinical and health and social services research.
- PPI should be treated as an ethical imperative in itself – that is to initiate the process, although evidence of its impact in ND research has been raised in some literature areas.
- It is important to seek better health outcomes as a consequence of PPI in ND research. At the same time, the difficulty of linking PPI in ND research to changes in health outcomes should be acknowledged. Therefore, the timeframe for measurement of the impact of PPI should be very long.
- Over time, the impact of PPI on research will influence the role of the researchers.
- The interests of the Pharma- and Medico- and Welfare-technology industry in PPI should be considered. The example of the European Patients’ Academy on Therapeutic Innovation Innovative Medicines Initiative (EUPATI-IMI) project should be monitored.
- Patients and carers may play a role in the process of feedback of study results to participants, to other stakeholders, and to the public in general.