Getting the buzz from patients
One of the early fears about technology is that it would isolate people and erode social relationships, but the reality is just the opposite.
By on Apr 23, 2009One of the early fears about technology is that it would isolate people and erode social relationships, but the reality is just the opposite. Social networking sites like Facebook and MySpace have exploded over recent times and in parallel has been the development of web-based patient support networks such as patientslikeme as well as patient online support groups, chatrooms and newsgroups.
These sites are largely patient driven and provide support, encouragement and information to members. The sites are generally organized around illness diagnosis. Patients or their families log on to find out information about new treatments and how to manage the side effects and emotional effects of their illness and therapy. Until recently no one has looked at how the material posted by patients can be used to improve treatment information and health services.
There is a growing realization that patient web groups and blogs may provide important information that can help us understand the way people are talking and thinking about illnesses and treatments. New technologies that are able to collect and analyse the thousands of blogs and postings can provide useful current information about what patients are thinking about. And all illnesses are not created equal on the web.
We know from a research study conducted at the University of Texas that there are more support groups for certain illnesses than others. For example, after adjusting for prevalence of condition, breast cancer patients have created 40 times more support groups than hypertensive patients. This can also be seen in the number of times cancer is mentioned in current blogs compared to stroke or heart attacks as measured by blogpulse. In general, more stigmatizing illnesses tend to have more support groups on the web.
What information can these web communities provide? At a simple level they provide data about the information needs of patients and the type of support patients see as useful. This can tell us by way of the most frequently asked questions the sort of problems and concerns that patients have about their illness and medication. Step back further from the questions and answers and look at the way patients talk or the words they use and this material can be analysed for themes and dimensions by new text analysis software such as LIWC.
There are also some new developing areas on patient support websites. Some websites like 23andme are using patient communities with an interest in genetic disorders to gather patients for research studies. Patientslikeme is even showing a research study tracking how patients taking an experimental drug are doing in real time. Others have even suggested patient web groups can provide an early warning to unexpected drug reactions by tracking symptom complaints. Some patient websites also provide a place for feedback from patients to air their concerns about a health service. Patient Opinion in the UK provides feedback from patients on the NHS. This has been useful for creating improvements in the treatment.
Social networks for patients on the web are only likely to increase as the younger and middle-aged web savy individuals get older and develop illnesses. It is likely the websites will become more sophisticated and specialized and they will play a more important role in the health care landscape. It is important that we develop better ways of capturing the buzz from patients on the web so we can use this information to improve information and support to patients.
Keith J Petrie is Professor of Health Psychology, University of Auckland and also a consultant for Atlantis Healthcare. He will be speaking at our upcoming Patient Relationship Marketing Summit 9th-10th June 2009, London