Last week a colleague of mine spoke to a health reporter from a national media outlet. The reporter, who is in charge of the national health news, asked a simple question…what is viral hepatitis and how does it impact people? With an annual death rate of 1.4 million people worldwide, more than HIV/AIDS or malaria, how is it possible, in the face of such numbers, that hepatitis is so ignored?
One of the main reasons often cited for the lack of awareness and lack of action is the absence of accurate data and insights from hepatitis patients themselves. Almost all the information and data available about viral hepatitis have come exclusively from clinicians, epidemiologists and the pharmaceutical industry, while far too little information has come from the people living with—and too often, dying from—this virus.
Almost all the information and data available about viral hepatitis have come exclusively from clinicians, epidemiologists and the pharmaceutical industry, while far too little information has come from the people living with—and too often, dying from—this virus.
Recognizing the importance of learning from patients’ experiences, in 2014, we developed the HCV Quest Global Patient Survey to allow for the patient voice to be truly heard. With the support of the European Association for the Study of the Liver (EASL), we administered the survey to 4,000 people from 73 countries to learn how living with hepatitis C impacts all aspects of their lives, how much they knew about viral hepatitis before they were diagnosed and what their experiences had been related to diagnosis, care and treatment.
In 2015, we launched the survey results, which showed that not enough is being done by governments to raise awareness, that physicians persistently miss opportunities to diagnose people, that living with hepatitis C and undergoing interferon-based treatment has a significant impact on a person’s physical, psychological and emotional health, and that, in general, not enough is being done to support patients across the world including providing them with critical information on their health status, treatment options, and prevention and management strategies. Most concerning of all, healthcare professionals are not referring patients to groups that exist to address these very issues.
These findings were invaluable in not only helping us understand the scope of patients’ concerns but a useful way to reach our key audiences with new data.
These findings were invaluable in not only helping us understand the scope of patients’ concerns but a useful way to reach our key audiences with new data. Surveys are a powerful advocacy tool for generating new data that can be used to create awareness and conversations among different stakeholders, including policy-makers, media, medical professionals and the general public.
As a result of our global survey, we received widespread media coverage and have used these insights to start conversations with key stakeholders around patients’ experiences, knowledge and concerns.
On 10 March, at 10am GMT and 7pm GMT, we will be holding the second webinar in our Tools for Change webinar series, which will focus on surveys and how to interpret and leverage results for effective advocacy. The following webinar panellists will discuss and provide examples of using surveys as tools for effective lobbying and campaigning:
- Jeff Lazarus, Professor, University of Copenhagen and Editor-in-Chief of Hepatology, Medicine and Policy
- Raquel Peck, CEO, World Hepatitis Alliance
- George Kalamitsis, Chairman of Hellenic Liver Patient Association “Prometheus” and WHA Executive Board Member for the European Region
- Bridie Taylor, Communications Officer, World Hepatitis Alliance
We will also be looking at the HCV Quest survey as an example of a global survey. This coincides with the launch of the HCV Quest Toolkit on 29 February. The Toolkit includes a set of 22 national reports in local languages and a full resource hub with documents and resources designed to support the development, roll-out and utilization of these survey results for national advocacy activities.
If you are unable to join, the filmed version of the webinar will be available on our website after the webinar on the 12 March.
We look forward to having you join us.
Hepatology, Medicine and Policy is now accepting submissions on this and related issues. For more information, visit: www.hmap.biomedcentral.com.