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“We need to get the best value we can from existing resources and we can do that by doing really good quality research. I think JPND is contributing by trying to meet the big economic challenge, as well as the clinical and biological challenges.”

What impact do you think JPND is having?
I think it is having a big impact as a focal point. I think it has managed to bring together discussions and thinking around this set of conditions, and the research that is needed to tackle them.  I think it has helped to generate more funding for this endeavor, too.  I think it has also helped to bring together researchers to communicate what they are doing.  So lots and lots of ways: I’m very positive about it. I came in as a social scientist into what is an area dominated by biomedical science, but am very positive about what JPND is doing in my area of Health and Social Research.

Did you always want to work in the area of health and social care research?
I started off doing a Masters degree in Econometrics and Mathematical Economics, which I loved intellectually, but I got bored with doing something that felt too removed from the real world.  I have always worked in Health and Social Care Research, and I absolutely love it. And I particularly like the dementia field, as I think it brings enormous intellectual challenges. I have a parent with dementia – indeed, almost everyone knows someone with dementia, so it’s a real-world problem today, and I like working in an area that is that challenging.

What is the best piece of advice you have received in your own career?
I’ve been very fortunate to work with people who are strong on the science of research and I hugely value that. I have also been very fortunate in my job to work with people whose main priorities are changing policy or putting policy into practice, and they constantly remind me that university-based researchers need to be aware that there is a real world out there, and we need to be serving that real world – so it is about balancing the scientific robustness with what we can do for today’s populations.
And what would your advice be to younger researchers?
My advice would be “come into this field and stay in it”.  This is an interesting field partly because there are no simple solutions.  There are huge challenges, so from that point of view, it is very good.  It is important that researchers keep a broad profile and that they look to do good, solid scientific research.  In my field, I would want them to do research that will have an impact on the real world and to do that quite quickly, so that’s again balancing the robustness of science with the relevance to today’s challenges.

How can we better involve patients in research?
As a research community, we have not involved patients enough, and I think we’ve just assumed that they are not able to participate – that’s clearly not the case.  We need to understand what they see as important, both in the short- and long-term. They are not the only people whose views need to be taken into account, but we need to include them more in research, in terms of how we plan it and how we interpret it. Doing so will generate better value for our research.

Click here to read Martin Knapp’s biography.

“JPND is a global initiative that is likely to provide breakthrough knowledge about dementia causes, mechanisms, treatment and care. It both stimulates and adds value to national funded research in the area. The more countries that join JPND, the stronger and more successful will this coordinated action become.”

What is the general perception of JPND in Norway?
JPND has been steadily gaining attention as an important international research initiative among Norwegian researchers, as well as among health policy makers and related patient/public organisations.

How are Norwegian researchers performing in JPND initiatives?
Norway has a relatively small research community. Nevertheless, we are pleased to see that Norwegian researchers are doing well in JPND. Several experts have actively contributed in working groups that are developing strategic measures, and Norwegian researchers are participating in successful consortia from five of the six JPND transnational joint calls so far. Norway has several strong and internationally well-known groups on brain research. The opportunities presented by JPND will no doubt attract their attention to research on neurodegenerative diseases.

Are there initiatives in Norway for supporting researchers who wish to apply for JPND funding?
Yes, the Research Council of Norway (RCN) is promoting JPND by providing information and arranging conferences through the relevant national health research programmes. The RCN is also developing a national strategy for JPND research and will create a Norwegian JPND web page. In addition, the Norwegian Health Association, which is a voluntary humanitarian organisation, runs a program supporting research on the causes and mechanisms of dementia-related diseases. This contribution complements nicely the government-funded research in the area.

What do you think is the main benefit for your country in participating in JPND?
In my opinion, participation in JPND has several benefits for Norway. JPND is a well-organised and well-managed joint programme. There are highly competent people at all levels. Being successful in JPND will really enhance both the capacity and quality of Norwegian research in neurodegenerative disorders. Neurodegenerative diseases are one of the greatest medical challenges our society needs to meet, and that can only be done by joint international efforts in research and innovation. In joint research programs we are more likely to meet the common goals in research, discovery and innovation than working alone.

And your Ministry? Are there benefits to being a member of the JPND Management Board?
Being a member of the JPND Management Board means that we have a voice and a vote in discussions on strategic issues and goals, follow-up actions and research priorities. From the perspective of the Norwegian Ministry of Health and Care services, it also gives valuable experience and knowledge of the JPI instrument.

“Research is all about increasing quality of life and cannot happen without public participation.”

“Never be afraid to ask questions, even though we, as scientists, don’t have all the answers.”

“Take care of your brain by embracing a lifestyle that promotes its overall health.”

What in your opinion are the most pressing issues in research into neurodegenerative diseases?
Neurodegenerative diseases present us with several paradoxes: A number of conditions share several features in common, and yet even within a particular disease, a subset of patients display dissimilar symptomatic profiles and pathological features. In conditions like Huntington’s disease, there is a clear genetic cause, whereas in others, such as Alzheimer’s disease, genetic mutations are only present in a small subcategory of individuals. Unfortunately, there is also a lack of models that really work, and this makes it difficult to understand the complex pathophysiological mechanisms involved. The identification of biomarkers that potentially predict neurodegenerative diseases in the pre-symptomatic stage will not only help in diagnosis but will also enhance our understanding of the underlying pathological mechanisms.

What advice would you give to young researchers who want to build a career in this field of research?
Work hard, be passionate and never shy away from asking questions. Neuroscience is a challenging field, so expect the unexpected.

How can research into healthcare and social care be better supported to build up its capacity?
Countries that have committed themselves to enhancing the level of research in health and social care are increasing, as can be testified to by the various national dementia strategies that have been launched in recent years. Although research may be seen as an element of risk in terms of return on investment, it is essential for the promotion of well being and modernisation of health and social services. High-quality research that promotes innovation and good practice while ensuring scientific collaboration, public involvement and effective transfer of knowledge will have a positive impact on the lives of people living with neurodegenerative conditions.

What impact do you think JPND is having on neurodegenerative disease research?
The challenges that neurodegenerative diseases present to us are far too many, and thus coordinating our efforts is a major prerequisite in responding to this. Besides, joining forces is also essential in promoting high-quality scientific research. There is no doubt that JPND’s Research Strategy is reaping its fruits, as can be attested to by the level of response to the scientific calls.

In your opinion, what is the benefit of JPND for patients and/or patient organisations?
JPND is already benefiting the lives of people living with neurodegenerative diseases and their caregivers. Just by taking a look at the supported research projects under the JPND 2012 translational call, which focused on themes evaluating health care policies, strategies and interventions for neurodegenerative diseases, one can appreciate the impact that such research will have on areas such as timely diagnosis and access to care.

Click here to read Charles Scerri’s biography.