The article below, from the National Library of Medicine site, analyzes four PCa discussion forums (none are identified -- was HWPC possibly one of them?), to determine the interplay between the formal medical advice from doctors that a questioner has received, and how that is supplemented by what he learns from messages posted by PCa board members replying to his inquiries.
"Communicating health decisions: an analysis of messages posted to online prostate cancer forums"
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5060709/That is, to what extent is the formal medical advice that a questioner has already received from medical authority influenced by what he learns from PCa board posts?
The article analyzes the process by which visitors to PCa discussion boards obtain information from these boards, and how this new-found information plays into their treatment decisions.
It also is of use in noting how that information supplements what their doctors have already told them about
PCa, thus increasing their knowledge base for dealing with the disease.
General summary of article:
The authors studied the role that PCa online message boards play in assisting newly arrived board participants in making their own PCa treatment decisions. Exchange of information is interactive, and is usually in the form of "I can’t tell you what to do but this is the decision I made and why." The anonymity of online message boards may make for more candid exchange of information. Formal treatment decision information supplied by doctors takes place with or without input from PCa discussion board(s). When it is done with input from discussion board(s), the formal medical advice which the questioner has brought with him to the discussion board may be altered by what he learns from interaction with board members. This new information gained from visiting the discussion board may be in a variety of forms over a variety of areas. From the article:
"This paper explores the types of decision‐making processes that people are exposed to on PCa online message boards. The kinds of treatment choices patients are making and the reports of their decision‐making processes to peers through an online environment are examined."
"(Other) patients’ experiences are an important part of the evidence that people use when making decisions about health care."
" ... it may be that online messages reflect the culmination of the (sometimes lengthy) decision‐making process that PCa patients engage in."
" ... only a very small amount of messages observed in the present study reflected a lay belief or misbelief in PCa treatment. Findings suggest that online forums can be a venue where men with PCa can communicate useful information and exchange personal experiences of disease management."
"Previous studies have indicated that the Internet can empower cancer patients to make treatment decisions. Searching health websites can unearth new information to take forward to meetings with the clinicians and PCa message boards explicitly encourage people to take an active, thorough approach to their investigations. This certainly seems to be ‘good advice’ but what about exposure to treatment decision‐making online? What are the implications for people accessing such messages? This study shows that men reading these message boards are exposed to positive examples of patients having made their decisions after careful consideration of the relevant information. To this extent posting personal experiences of decision‐making online could be argued to be a form of positive public involvement in health care."
"Despite the call for cancer patients to be involved in choices about their treatment, it is interesting to note that this study reinforces the influential role of the clinician in patient decision making. It is worth noting that given the relatively small numbers of older adults online, the group of PCa patients represented in this study may not be typical of all PCa patients. However, there is some evidence to suggest that growing numbers of PCa patients consult the Internet for information and advice about the disease. Clinicians, when discussing treatment options with PCa patients, should be aware of the varied decision‐making processes reported within online forums and blogs." And, presented in boldface because it makes a point of particular interest to us:
"It could be reasonably assumed the members who shared their treatment decision‐making processes in the forums are active Internet users and might have used the Internet to aid their treatment decision making. Whilst there has been concern that the rise in the use of Internet for health information might present a challenge to medical expertise, our findings concur with others, suggesting that despite the proliferation of the use of Internet, doctors’ views and professionalism are still highly valued by patients with PCa." Or, stated more in laymen's terms, "Thanks for the additional information, guys, I'll consider adding it to what my doctor has already told me," the questioner might say.
Not a startling conclusion, of course, and probably what we would have expected to hear, but now somebody has confirmed it with a formal study.