by Louise Morrison (@ljmorr)
A few months ago the sudden illness of a close family member led me unexpectedly into the field of health information. As I came to terms with a new and alien world of hospital visits and test results, the librarian in me turned to information-seeking to make sense of our new situation. I was lucky – my library and research background meant I had some idea of how to go about finding reliable health information and my health librarian friends were able to fill in the gaps. For me, having a good understanding of everything that was happening made the whole experience easier to deal with and I felt very grateful that I was able to access such useful information.
But finding the best information was not entirely straightforward: for every useful and reliable piece of information I retrieved, I had to reject twice as many I deemed to be of poor quality or, at worst, plain misleading. And the whole experience got me wondering how other patients and relatives experience the field of health information. Would most patients be aware of the various health information sources available to them? And would everyone know to reject the most questionable sources of information?
Joanna Ptolomey, left, is a freelance librarian, working in the health information sector and Shayna Conn, right, is a National Information Worker for Breast Cancer Care. Both Joanna and Shayna gave presentations on their work and discussed their experiences of the health information sector in general.
One of the main themes covered by both Joanna and Shayna was the existence of and interplay between the two key types of information used in the health information sector. These are:
1) Quality-assured information – This is high-quality, factual information based on thorough research and sound evidence. Users might access this via sources like NHS Inform, government publications, Breast Cancer Care or the Cochrane Library.
2) Non quality-assured or community information – This refers to people-sourced information about experiences of illnesses and recovery and support available in the community. People might access this information via libraries, community centres and online forums.
I was quite familiar with the first kind of health information but had not really had much experience of the second kind. In fact, when it was first mentioned in this session, I was a little suspicious. In my own quest for knowledge I had tended to steer away from this kind of information in favour of sources presenting cold, hard facts I felt confident I could trust.
But, as the session developed I started to see how this community information could play a different, but equally important, role throughout illness and recovery. As Joanna pointed out, a patient is about more than just the illness they are suffering from. So it’s natural that they would need support that goes beyond the quality-assured factual information. This support might take the form of helping people to access benefits if they are unable to work due to illness or a forum where fellow-sufferers could share their experiences of a particular condition. This community information could be particularly vital for patients in the recovery phase. Once treatment has ended and patients are no longer receiving medical support, they often feel quite cut off. Although the immediate urgency has passed, the illness may have left them with long-term health effects and most patients still have lots of questions and fears for the future.
Shayna told us about the mix of quality-assured and community information provided by Breast Cancer Care, which further convinced me of the need for this dual approach to health information provision. I was very impressed by the procedures in place to ensure all quality-assured information is accurate, easily understandable and up-to-date. But I was also very interested to hear about their online forum, where those those affected by breast cancer can share their experiences. The forum is seen as a space where patients and carers can talk freely. However, I was interested to find out that it is moderated by trained professionals who will step in if they feel discussions are heading dangerously into misinformation, for example if someone was advocating stopping chemotherapy in favour of an unproven alternative therapy.
After Joanna and Shayna’s presentations, a lively discussion on health information issues ensued and a lot of interesting points came up. The main points I took away with me were:
There can be a lot of inequality in health information provision
While the volume and quality of information available for a high-profile condition like breast cancer is excellent, this is sadly not the case for many other chronic conditions. Information provision can also vary between areas, with widely varying systems and services available to patients living in different parts of the UK.
Different people have different information needs
There is no one-size-fits-all approach to health information provision. People affected by serious illnesses cope in different ways. While some patients / relatives want to read all the information available on their condition and keep up with all new developments, others are content to know only the basic facts presented by their consultant as needed. So, it is important that Health Information Professionals are guided by the needs of users and help them to retrieve the level of information to meet their individual needs.
Social media can bring people with rarer conditions together
Previously, people suffering from rarer conditions could find it very difficult to connect with other sufferers and find information on their illnesses. But the advent of social media has changed all this and patients worldwide can come together online to share experiences and discuss the most recent research findings, which can be a lifeline to many patients.
Sadly, misinformation in the health information field still exists
Despite all the excellent health information available, there are still plenty of poor quality and, sometimes, dangerously misleading information sources. These can be easily retrieved via a Google search for symptoms or conditions and may not always be easily distinguishable from the reliable information sources. A number of participants discussed the sadness they felt at patients with serious illnesses being misled about revolutionary treatments and sometimes raising large amounts of money to pursue these options.
The various points coming out of this session, coupled with my own recent experiences, made me more convinced than ever of the vital role health information providers play in the lives of patients and their families. The increasing use of the Internet and social media to disseminate information presents both opportunities and challenges for Health Information Professionals and it seems like there may be exciting developments in this field in coming years.
As someone pointed out on Thursday night, we will all be patients at one time or other, so health information affects us all. If anyone has any other experiences either as a Health Information Professional or as a user of information, I would love to hear your thoughts.