All of the women who participated in our research, regardless of their age, ethnicity or educational background, reported regularly searching online (typically described as ‘googling’ or using ‘Dr Google’) for health information, advice and support. For most of the participants, searching online was their first port of call. The majority of participants noted that one of the benefits of online sources is that they could search for information or seek peer advice in online support forums. Making an appointment with a medical professional meant taking time to find an appointment that would suit them and then attending.
I think because it’s so easy, the computer’s in the room. I can give you an example: when my daughter was pregnant she had high blood pressure. Straight away I would go to Google, type high blood pressure and pregnancy and try and get more information that way … It’s definitely more accessible, trying to get a doctor’s appointment obviously can be time consuming and you may not get the appointment that you need. (Leanne, 55, high school education, Anglo-Australian)
The women noted that medical services are not always available when they are required, either because it is a weekend or because people live in a location where services are stretched. In these cases, online sources offer an alternative. For example, Paula (36, university degree, Anglo-Australian) lives in a small town, and has difficulty getting medical appointments when she needs them. She has a serious chronic mental health condition that requires regular medical attention, but the strain on medical services in her area means that she is forced to go online instead.
It can be up to a week before people can get in to see doctors here, so if you want information, like, then and there, or sooner than a week, it’s easier to go online and try and source it yourself.
These initial accounts, therefore, highlight the key affordances offered by online technologies: accessibility and convenience. Further analysis of the participants’ accounts found that while online searching was practised by all the participants, they engaged in complex interactions with online information, using it in diverse ways in their negotiations with seeking face-to-face medical expertise. We identified six main agential capacities: 1) self-screening; 2) preparing for and following up a consultation; 3) selective engagement; 4) caring for others; 5) creating and sharing new information; and 6) challenging medical authority. These capacities are not exclusive of each other: women may take up a combination of them in their everyday information-seeking practices, depending on the context. They are discussed in detail below.
Many of the participants’ health-related online searches focused on investigating their symptoms as an initial screening tool. Women may then go to make the decision to seek a consultation with a doctor, either because their self-assessment suggests their condition may be serious enough, they want reassurance, or if symptoms persist. It was evident from some women’s accounts that they viewed the practitioner consultation as largely confirming their self-diagnosis after accessing relevant information online. This confirmation is critical because the practitioner has diagnostic expertise, as well as the authority to prescribe medication or refer patients to specialists for further treatment.
[Searching online] sort of assists me in planning what I should do – whether it’s something I should go to the doctor about or whether it’s something that I can handle myself. It’s more a diagnostic tool that I use. I know you shouldn’t, but it’s what I do use it for. A diagnostic assistant. (Margaret, 73 years, high school education, Anglo-Australian)
As these women’s responses demonstrate, people are aware that the medical profession often frowns on patients using ‘Dr Google’ (as Margaret says, ‘I know you shouldn’t’), but they are also conscious of the importance of not seeking medical attention if it is unwarranted. As some participants noted, it depends on the seriousness of the health condition to what extent they sought further medical advice. Conducting a search online is a way of determining whether their or a family member’s symptoms are ‘serious enough’, as Sharon (59, high school education, Anglo-Australian) notes, to make the effort to take further steps involving consulting a doctor.
Preparing for and following up consultations
Even when women plan to present at a general practitioner, they can see researching their symptoms online in advance as valuable. This research supports their health understanding so they can more readily engage in the advice from practitioners. Katrina (38 years, university degree, Anglo-Australian) lives with ulcerative colitis, a chronic digestive disorder, and consults regularly with her general practitioner. She noted that:
I find that if I do the web stuff before I go to the GP I feel I’m a bit more prepared to hear what they’re probably going to tell me and get reassurance from them. So – I mean, I kind of think I’m a fairly health literate person. So in my case I’m quite happy to look up things on the internet and be like well, that’s from a relatively good source, that's from a dodgy source or whatever. But at the end of the day I don’t have a degree – a medical degree anyway. So I would like to go and see my doctor or my specialist just to make sure that what I’m thinking is actually the same thing.
An initial online search can also be a way of arriving at a medical consultation with a clear plan of what to ask of the doctor. This was evident from the account of Marilyn (67 years, high school education, Anglo-Australian), who explained that she uses online information as a platform to become informed and advocate for treatment:
Anything that shows up for me I normally google it and look through it, see if I can get any clues to what it is. And then when I go and see the doctor about it, I demand to have the sort of care that I’m supposed to get instead of being patted on the head and sent away.
Women may also go back to online sources having consulted a practitioner, as a way of further looking for details about their diagnosis and self-management of their condition. As Marie (73, university degree, Anglo-Australian) commented:
Well, you can explore it more online. The doctor will treat it, usually treat the symptoms but doesn’t go into any sort of genetic predispositions or doesn’t tell me about what the medication does or any possible side effects. So I can research that properly online, myself. If I’m having symptoms I can find out if something is wrong, and if it’s really bad I wouldn’t self-medicate, I would go back to the doctor and say, “Look, this isn’t my imagination, it’s this”.
While the participants were actively managing their own health using different information sources, they are aware of the limits of their health knowledge. Several women commented about the risk of finding information online that would cause unfounded anxiety. They viewed visiting the doctor as the way to avoid this. Emily (25 years, university degree, South-East Asian) noted that while she would go to the internet first for health information, she considered doctors to be the most important source of information:
Because Google could tell you that you’re dying or have brain cancer but really you just have a bad flu. So I just tend to trust that the doctor’s got a bit more knowledge than me.
The majority of participants expressed caution about the accuracy and validity of the health and medical information they found online and, in some cases, expressed difficulties in knowing how to assess this information. Concerns about online health information mean that evaluation of information quality is important. Most women had some kind of system for evaluating quality, including a strategy of also seeking advice from a practitioner or taking advice from medical practitioners about where to find quality information. Some women looked for government health department websites, those run by high-profile non-government organisations or well-known medical websites such as WebMD. Others preferred peer-to-peer resources in online forums or social media groups, perceiving these to be less driven by an agenda.
Several women expressed concerns about sources they identified as profit-driven rather than oriented towards patients’ best interests. As Houda (45, university degree, Middle Eastern) commented of online forums she looked at:
You get different perspectives from different people, I think they are real people, I don’t think they have any agenda behind what they’re saying. If you go on to a health website you think, “Ok, who’s funding it? What pharmaceutical company?” Do you know what I mean? I think they [the people contributing to online forums] are a bit more honest than websites.
Some women were selective about the kinds of information they would principally seek online. For instance, they may look for general health information such as that on diet from online sources but seek medical attention for topics they deem to be ‘medical’. Women also valued local sources of information because they considered them to be more relevant to their own circumstances. A common strategy of evaluating the validity of an internet source articulated by participants was determining whether it was Australian:
I mainly go by whether it’s an Australian-based site. If I can’t tell by the link that it takes me to, I look for contact details to see if it’s an Australian-based site. So I tend to believe Australian-based information because it’s more relevant than what another country’s health information would be. (Rosa, 36 years, university degree, Anglo-Australian)
Caring for others
Women’s practices of using online search tools to support health assessments and find information also extended to family members. In engaging in this practice, they were performing the role of carer, taking responsibility for seeking information on behalf of their family member. As one woman explained, googling for information allowed her to find health information for herself and her children across a diverse range of topics:
You can get results for what you’re searching for whether it be something related to me specifically, like my own workout or food or my own wellbeing like probiotics to take and that kind of thing, or it’s something related to my daughter like baby food or that kind of thing. Or it’s just something for my older child: you know, websites specific to her disability or googling about medications or conditions, because I pretty much do all the health sort of stuff for the whole family. (Hannah, 34 years, university degree, Anglo-Australian)
It is not only young children for whom women were frequently seeking online information. They also searched on behalf of their adult children, partners and elderly parents. Another example is Susan (56 years, university degree, Anglo-Australian), who has an adult son with Asperger’s syndrome and a husband living with diabetes and a heart condition. She said that she frequently goes online to find information related to their conditions that she then shares with her son and husband. Sandra (55 years, high school education, Anglo-Australian) supported her mother-in-law’s health by searching online:
My mother-in-law had shingles, and so straight away I’d go to Google and try to find out what the symptoms are, you know, how to cure it, what’s the best way to treat it, that sort of thing.
Creating and sharing new information
For women living with or caring for children with chronic health conditions in particular, online sources were often used as a form of lay creation and sharing of knowledge. These women used discussion forums and social media groups to help them find a label for conditions that previous medical consultations were unable to identify, thus achieving their own diagnoses. Once a diagnosis was achieved, women with a chronic health condition used the internet to find support communities or in some cases, create their own. These communities were used to keep abreast of existing knowledge (treatments, tests) on their condition.
Louisa (30 years, university education, Anglo-Australian) is one such example. She lives with several chronic pain conditions, to the point that she is too unwell to work, although she studies part-time at university. She said:
I self-diagnose a lot because quite honestly, I know my body better than they do. I have two doctors who basically go, “Well I think it could be this, do you want to go home and google it and tell me what you think?” They trust me with Google enough to do that. Just the other day … my doctor said to me, “I want you to try this new medication, but you’ve got to go home and read about it first and see if you decide if it’s what you want to try or not.” So sometimes I go, no, well I think it’s going to have these side effects or like I read this about it and I’m not comfortable taking it, or I think, no, no, it sounds really good, I’ll give it a go.
From Louisa’s perspective, online information helps make sense of her embodied, self-knowledge towards a diagnosis. It also provides information about treatment options and how they might be physically experienced. She is then able to be actively engaged in the discussion with her practitioner over the course of action.
These practices of seeking peer information and support can extend from women’s own health to that of family members with chronic conditions and disabilities. However, it does not necessarily exclude recourse to the authority of medical expertise. For example, Rachel (38, technical certificate, Anglo-Australian) is interested in alternative health. She explained that she uses many Facebook groups to find information on this topic. Accessing these groups gives her fast answers to her health questions, but through selecting to ask questions in different forums she also ensures her guidance is relevant to her values. While Rachel is very actively involved in multiple online peer communities in this way, she is also conscious of their limits and does not always use this information source if she feels she needs a face-to-face medical consultation:
I’ve got spots on my hand, it could be dermatitis, it could be hand foot and mouth, it could be a rash, like you know, it’s huge. Whereas if the doctor looks at it “Ah yes, you have a rash.” It’s easy for them to see it straight away. But if you’re googling stuff, or you’re using the internet, or even social media for that matter, they don’t know the full story and they can’t see what you’re talking about – it’s just their opinion. But if you go to the doctor, the doctor has studied for this and they know what they’re looking for and they know how to deal with it.
Similarly, Susan (56, university education, Anglo-Australian) said that she thinks doctors are an important part of healthcare for her son and husband, but also notes the limits of their knowledge, particularly in new developments: ‘quite often I’ll do research to see if there’s anything new coming out’. The online information Susan finds is then shared with her doctor, who is able to help her assess its validity and value. She describes a partnership between herself and her doctor.
Challenging medical authority
For a small number of women, online information had superseded face-to-face medical expertise. They now relied on doctors mostly to generate an official diagnosis and prescribe tests. One example is Justine (38, high school education, Anglo-Australian). Like Louisa, Justine lives with chronic pain related to multiple conditions. She commented that she has found online research very helpful due to inadequacies in her treatment with practitioners, but her doctors have discouraged her from information seeking in this way. She said that getting to the bottom of these issues resulted directly from her own research and pushing practitioners for tests to investigate.
[Doctors] always say don’t use Dr Google, but you know what, it’s helped me immensely. I have no high regard for the medical [profession]. Yeah, but I still have issues where I have to rely on them … I don’t go in thinking well you must be an amazing person because you have a degree.
Another example is Megan, who is 48, university educated and Anglo-Australian. Megan lives with lipoedema, a chronic condition mostly affecting women that causes abnormal building of fatty tissue in the limbs and buttocks and is often mistaken for obesity. Her dissatisfaction with the mainstream medical engagement with her condition drives her own information seeking/sharing. Megan does a lot of online research, and also very actively participates in support groups on Facebook, both sharing and receiving information on her condition in the form of links to research, papers, journal and media articles.
After I received my diagnosis, I looked at what I could find online, and because there just isn’t enough medical support for it in Australia. I realised that there really wasn’t a lot out there to help me. I quit my job, and basically decided to turn myself into a human guinea pig to see if I could find my own treatment based on all the different research papers that I’d read and that sort of thing. So, I did. For six months, I read everything that I could find online, and worked out some wide-ranging treatment protocols. I got on top of the disease.
The group Megan started on Facebook now has 1500 members. Megan is able to share all the information she has curated through her online searches on her Facebook community, thereby establishing herself as an authority in her own right. She said that she only goes to a doctor now when she needs referrals, and in these appointments, she requests what she’s after rather than asks for advice. Megan observed that while her original general practitioner was willing to work with her as a partner, other doctors have found her ‘empowered patient’ approach more threatening:
My regular GP was very helpful and put me on a chronic disease management plan, which gave me the five allied health appointments. But then she left town and her replacement was very intimidated by a patient that knew more about her disease than she did. So I just stopped going. So now I only visit GPs if I need something like referrals, and I basically go in with all my research, and tell them what I need the referral for. They get shitty about that.
Megan is an example of a ‘digitally engaged patient’ who has crossed the line for many of the doctors she consults. She has become too empowered and too challenging of traditional models of medical authority. As a result, she experiences antagonism from most of the general practitioners she has consulted.