There was compelling evidence that the speed of change is causing tensions. Some members of the public and some medical and health professionals are keenly embracing the opportunities; others are highly resistant to change. There was no pattern to this and views did not align with demographic patterns, age, sex or location.
While all our focus group participants accepted the internet was here to stay and that the majority of people turn there for health information, there were stark differences in their views on the benefits of informing patients to equip and support to play a part in their own care.
In the past, the role of the patient was largely passive. It was clear from our groups that some members of the public preferred it stay this way and have their doctors tell them what to do. They seemed to have high expectations of their doctors, yet were generally disappointed in their experiences. They complained about the paucity of good doctors who could communicate well. They acknowledged that many doctors were time-poor. They encountered many medical mishaps and had plenty of anecdotes to tell about “things going wrong”. They believed their GPs did not want them “to know too much” and were fearful of being seen to be challenging medical opinion.
Others, especially those with experience of serious or chronic illnesses, firmly believed in the benefits of participation. They wanted to ensure they did not “fall through the cracks”. They actively researched health information and reported, as a consequence, successful working partnerships with those treating them. The appeared to have the respect of their doctors and they enjoyed the enhanced control over their care.
Equally, the majority of nurses, practice managers, pathology collectors and other health professionals were highly enthusiastic about patient education, saw clear benefits in patient participation in care and believed it important that people had access to trustworthy information.
However, there were vast differences between the views of medical practitioners. Our hospital doctors, who were Sydney-based and in their 30s and 40s, were excited by labtestsonline.org.au and found it an indispensible tool for informing patients. They used it on the wards and thought it essential people were equipped to participate in managing their care “…making patients partners in care, actually having informed conversations with them rather than trying to knock it back to basics and doing it in an incredibly short timeframe”. “If they get the right information, it makes our life a whole lot easier.”
However, our group of GPs, who were from a broad range of suburban Brisbane practices and mostly in their 50s and 60s, were far more conservative and protective of their roles as the ‘gatekeepers’ of healthcare. All but one group member, did not want patients independently seeking information lest they became confused: “I'm not saying that they are not entitled to the information, but it takes years of experience and learning and that to actually understand why you do this and why you don't do that.”
Looking in from the outside, it appeared that in maintaining strict control of the information patients received, our GPs were creating an environment in which patients remained passive and their expectations could often be unrealistically high. At the same time, they were setting themselves up to take the blame if outcomes did not match anticipation. As one pathology collector put it: “Doctors are God…If there is something wrong the doctor’s going to look after me.” (Collector, Brisbane)