Carol Maddock and colleagues from Tenovus, a cancer charity based in the UK, and Kings Health Partners Integrated Cancer Centre in the UK, have issued a report on results from an European patient survey analysing the online information needs and information seeking practices of oncology patients.
The aim of Maddock’s survey, which was developed under the auspices of a FP7 European Commission funded Eurocancercoms project, was to gather data on the type of information patients wanted and where they went to find it. The internet was considered the third most trusted source for information, behind doctors or health professionals printed material. It is clear that oncology patients are consistently turning to the internet to learn more about their prognosis and treatment options and also for emotional support.
With a seemingly endless supply of websites providing some sort of information about cancer, Maddock and colleagues tried to figure out what led a patient to a particular website by focussing the survey on the type of information requested and the factors that influenced a person’s web surfing. Although the overall conclusions of the survey were that the type and amount of detail sought varied significantly from one patient to the next, there were issues that were consistently raised.
Many people commented on the number of sites available and the problems associated with knowing where to look and what to trust. In an attempt to better locate trustworthy sites, a number of respondents suggested that knowledge of accredited sites or those recommended by doctors or reputable organisations would be beneficial . The presentation of information in a friendly easy to understand format was also important. A number of responders also commented that a site should offer clear basic information but have more detail for those who were interested in learning more. Over a quarter of responders expressed an interest in support groups or in finding a site with advice and support.
After processing all of the information learned from the survey, Maddock and colleagues suggested a ‘Stepped Approach to Information Delivery’. The first step should offer a simple explanation addressing the patient’s question. The second step would offer the patient a more detailed explanation, possibly including clips or diagrams, and finally the third step would be a comprehensive source of information with links to some of the most recent/relevant information (journal articles/reports…). They also commented on the role social media can play in providing psychological support and as a resource where patients can share their experiences. Another important issue raised by the study focused on the trustworthiness of information found on the internet. While over half of the respondents claimed to trust the information they found, a common request was that doctors review and recommend websites.
Maddock concluded the report by mentioning the development of ecancerHub, which is aimed at addressing many of the needs mentioned in the survey. The website was developed with help from experts across all areas of oncology and thus fulfils the need for a reputable site. Also, ecancerHub has a strong social media element, allowing participants to share information and engage in discussions. While this website is still in its infancy, it was designed to be a comprehensive site including both up-to-date expert information and access to patient discussions.
Pof Richard Sullivan presenting ecancerHub at the recent European Multidisciplinary Cancer Congress.
Overall, results from this European survey highlighted the role the internet plays in disseminating information to cancer patients and the need to create a trustworthy source for patients to interact with others and learn about their treatment.
Brandcast Health was a lead technology partner in the Eurocancercomms project and scoped, designed and built ecancerHub.
Reference: C. Maddock, K. Ahmad, I. Lewis, R. Sullivan; Online Information Needs of Cancer Patients and their Organisations.