Responsible Business, Better Future
Mobile Menu

ROCHE - ALOUD, CANCER IN ITALY

Added on 22-03-2013

Company

ROCHE

Network

Fondazione Sodalitas

Year

2011/2012

Business challenge

2.2 million people living in Italy having experienced cancer: 1.3 million overcome cancer for at least 5 years and 800,000 for at least 8 years.
These numbers demonstrate on the one hand that cancer is a mass pathology with a huge impact on patients and their families for a long time and on the other hand that there are no data to measure the indirect costs that cancer patients and their families have to face in terms of loss of work, money and more.
Patient organizations stress the great value of innovative therapies in improving quality of life, reducing the timing to return to work and more. They also denounce the unequal access to the best therapies in different regions of the country.
"Aloud, cancer in Italy” is the first Italian research that reports “aloud” the social burden of cancer in Italy, examining needs and expectations of patients and families with the engagement of more than 1,000 patients and 700 carers.
It is the first Italian report on patients that shows a complete and detailed overview of features, problems and solutions highlighting the social burden of the disease.

Description

"Aloud, cancer in Italy” is the first Italian research that reports “aloud” the social burden of cancer in Italy, examining needs and expectations of patients and families with the engagement of more than 1,000 patients and 700 carers.
The massive data collection was generated thanks to FAVO (Federation of more than 400 patients groups) and evaluated with the support of Censis (the main social research institute in Italy).
For this research, more than 1,000 patients and 700 carers filled in a structured and exhaustive questionnaire on the basis of their personal experiences facing cancer.
Partners of the report: besides FAVO and Censis, also Il Sole 24 Ore (main economic Italian newspaper), AIOM (oncology scientific association) with wide media participation. «Aloud, cancer in Italy» was presented on November 8th at the Senate during an event organized with “Sole 24 Ore Group”. Thanks to the report, new evidence-based material has been made available for patients, advocacy groups and all other stakeholders.
This report represents a basis to work on and think about in order to satisfy patients and caregivers needs. Besides Censis and Favo that worked on the report, Roche personally wanted to be part of this event together with institutions that discuss these topics everyday.
During the meeting members of institutions, advocacy groups, physicians and scientific societies discussed the social impact of the disease on our system.
Furthermore the site www.adaltavoce.info was created to show and share the results of the research and the videos of some patients who wanted to tell their stories «aloud».

Impact

The strong collaboration between patient groups, scientific associations, and institutions was strategic for success.
We had the possibility to better understand the different point of view of our stakeholders.
Solid data represent an important aspect to start discussions and to drive solutions.

Challenges/Lessons learned:

Thanks to the scientific value of the analysis and the involvement of more than 1,000 patients and 700 caregivers the report realized with Censis and Favo with Roche support is the basis of the «IV Report of welfare conditions of oncologic patients». The important analysis led in 2011 will bring further data to the presentation which will give a complete and detailed analysis of the conditions of patients affected by CRC and breast cancer.  Furthermore an in-depth analysis of direct and indirect social costs of cancer will be made available.  These activities have caught the attention of the main actors and active decision-makers in the Health System.
The presentation of the report 'patients voice' has generated more than 300 media clippings, television and radio included, with a total readership of more than 60,000,000 contacts.
The recent health decree responds to patients' requests of equal access to innovative drugs immediately available after the National Health authority's approval.

More information

Solution submitted by

Please login to view this information. If you don't have an account? Request a membership