Patient Summit Europe

Jun 25, 2015 - Jun 26, 2015, London

Build trust: redesign your company around a better patient experience

“The Disease Lens” by Janssen– A New Educational Resource

Janssen's ‘Disease Lens’ provides authoritative information on some of the most serious diseases of the 21st century.

The Disease Lens was developed by the Janssen Health Policy Centre.  It’s a site where authoritative information on some of the most impactful diseases affecting European citizens is gathered, classified and made accessible to the public. Information is available on a range of fifteen diseases, from highly infectious diseases such as human immune-deficiency virus (HIV) and Hepatitis C, to mental illnesses such as depression and schizophrenia, as well as neurodegenerative diseases such as Alzheimer’s.

Beatrice Tardieu, Senior Director of Communication & Public Affairs, Janssen

Commenting on why Janssen launched this initiative, Beatrice Tardieu, Senior Director of Communication and Public Affairs told eyeforpharma,“There was no simple source of information available online where the general public could access data regarding diseases that affect Europeans. As its name,‘Disease Lens’ suggests, it’s a means by which people can retrieve health information about fifteen different diseases in Europe.  It brings together clear and verified facts and figures onto a single platform, free of charge, for the public to access.”

Source of data

The information on the site is from authoritative sources such as the World Health Organization (WHO), the European Commission, the European Federation of Pharmaceutical Industries and Associations (EFPIA), the International Diabetes Federation, and the Pharmaceutical Research and Manufacturers of America (PhRMA).

A good example of what the Disease Lens offers can be demonstrated with Tuberculosis (TB), one of the diseases featured on the dashboard. TBis ranked as the second leading cause of death from a single infectious agent after HIV. More than 100,000 Europeans suffer from TB.  Although globally, according to Disease Lens, the TB mortality rate has decreased by 45% since 1990, the WHO’s goal is to reduce TB mortality by 95% by 2035.

The Disease Lens also classifies this information by country.  For instance, according to the site, Romania, the UK and Poland account for about 50% of all cases of TB in Europe. About 25% of deaths from TB in the European Union occur in Romania, and half of this number are caused by multi-drug resistant TB (MDR-TB).

The site also gives information on various studies of new drugs being developed in the global pipeline, including information on the latest drugs approved by the European Union. Tardieu reassures that information on the site will be regularly updated as new information becomes available.

Educational purpose of Disease Lens

It’s primarily targeted to help policymakers and healthcare professionals find and deliver the best possible health outcomes for patients, by potentially offering new insights into issues that might otherwise remain invisible".

The data that is retrievable and downloadable from the Disease Lens is primarily meant to be educational. “Janssen believes that public health policy cannot be properly made without the availability of relevant data. It is hoped that through the information on the site, the healthcare community can keep abreast of the most credible publicly available data sources and hopefully encourage and improve debate around the true burden of diseases,” notes  Tardieu.“While the data may be accessed by the public, it’s primarily targeted to help policymakers and healthcare professionals find and deliver the best possible health outcomes for patients, by potentially offering new insights into issues that might otherwise remain invisible,” she added.

The information provided in the Disease Lens isn’t intended for making treatment recommendations. It does, however, contain some information about how many pharmaceutical products are in the R&D pipeline, especially in phase III, as well as the most recent treatments approved by the European Medicines Agency, in response to the very diseases which are spotlighted on Disease Lens.

Janssen’s ambition is to develop sustainable, integrated healthcare solutions for the most important unmet medical needs of our time by working in partnership with other stakeholders in healthcare.“Janssen, as one of the pharma leaders, is keen to foster debates within the healthcare community. That’s how we can build solutions for better patient outcomes and wider access to healthcare innovation together. These debates start with relevant and reliable data - and Janssen wants to be part of the discussion at the early stages,” said Tardieu.

The many benefits of the Disease Lens

Although the Disease Lens is primarily for the healthcare community, patients haven’t been left out. The design and content of the dashboard were discussed with some patient advocacy groups to align better with patient needs. As patient organizations, they too believed that good facts and figures would be helpful in their discussions and advocacy work.

“Patient-centricity is not just a buzz word for us,” Tardieu stated. Indeed, Janssen is committed to working with patients via their representative organizations. The company recognize that patients are experts too; they are experts in their own condition and the impact of their condition on their well-being and quality of life.

Patient-centricity demands that patients be partners in the research and development of pharmaceutical products. “We hope the content that is provided by the Disease Lens will enrich the debate between Janssen and the advocacy organizations.  We’re always happy to meet them in person, but we’re also looking at setting up an interaction online. The Disease Lens could be a good basis to start from,” concluded Tardieu.

Facilitating transparency

In the end, what the public needs is more transparency from pharmaceutical companies.  Transparency is what builds public trust and goodwill. By making information on diseases available to the public, the Disease Lens is helping to provide that transparency. Seeing an increasing number of pharmaceutical companies building an open and educational relationship with the public brings hope for further improvement of public healthcare.

You can find out more about the Janssen Disease Lens here:

Patient Summit Europe

Jun 25, 2015 - Jun 26, 2015, London

Build trust: redesign your company around a better patient experience