Table 5 Participant quotes supporting themes

People’s perspectives of online self-diagnosis and online health information seeking

Coherence (CO)

Reasons for using the internet

• “I use the Internet at home and in the office, and it is very easy, easy and most of all rapid. You lose very little time.. . And when you find what you need, then you can come back later and in a little moment I can see all the new things. So, why should I not use it?” (Caiata-Zufferey et al., 2010 [49])

Reasons against using the internet

• “There is so much information. For example, if I wanted information on healthy diet and how to lose weight, when you search, heaps and heaps of information comes up. So it’s really difficult to decide which to use, let alone whether it’s actually suitable for me or not, or even whether it’s trustworthy.” (Chu et al., 2017 [51]).

The prepared patient

• “… to go in feeling like you at least know maybe what to expect … and you know what questions to ask. Because sometimes going to the doctor is intimidating and then they … use the medical talk and you’re like, ‘I don’t really know what that means,’ so at least if you’ve read a little bit, you feel more prepared and can say, ‘Well, what about this?’” (Rupert et al., 2014 [33]).

Healthcare professionals’ perspectives of people online self-diagnosis and online health information seeking

Cognitive Participation (CP)

HCP’s perceptions for and against people using the internet for online health information

• “I think it is a good thing for patients to have access to medical information. … But this only applies to high-quality information. Because it makes people proactive. For instance, it makes people aware of insidious health problems that are often discovered too late.” (Caiata-Zufferey & Schulz, 2012 [48]).

• “For me that was the irritation, that the patient had far more trust in the computer and what they found on the web than in what I was trying to explain.” (Ahluwalia et al., 2010 [28]).

HCP’s reactions and behaviours to internet-informed patients

• “I’ve … decided that right upfront if somebody has clearly done way more reading into an area that I’d ever done I just say: ‘Wow, you know more about that than I do’ … It’s really important not to feel threatened by that information because … if you [did] … that will affect your relationship” (Townsend et al., 2015 [38]).

Sharing online health information with healthcare professionals

Cognitive Participation & Collective Action (CP & CA)

Communication

• “a huge difference … finding information, and what it means, before you go to the doctor so you can have an intelligent conversation … [and] ask them the right questions” (Townsend et al., 2015 [38]).

Bringing online health information to the consultation

• “I kind of watch the way you say it because you don’t want to offend [doctors]. I would just kind of say ‘I didn’t know whether it could be this’ … and introduce it like that.” (Rupert et al., 2014 [33]).

• “I think they [HCPs] probably take you a bit more seriously when you know your stuff, because they can’t fool you around, because they know that you have the answers” (Benetoli et al., 2018 [45]).

Impact of peoples use of the internet for self-diagnosis and health information seeking on their relationship with healthcare professionals

Reflexive Monitoring (RM)

Trust

• I wouldn’t trust a computer that much ... any specific information like ‘do this’ or ‘don’t do that’, because – even though it may be useful, I’d much rather deal with a human being, a doctor (Stevenson et al., 2007 [31]).

• “If you spend that last 5 min … showing them [patients] … “This is a website that you can read too. It’s got enough information but not too much and it won’t overwhelm you. This is endorsed by the Canadian Arthritis Society.” It kind of builds a level of trust and … adds a component of enrichment to the appointment … they read about it and I think they just feel a lot more like, empowered and cared for … equipped.” (Townsend et al., 2015 [38]).

Role changing

• “That’s what I’ve been experiencing by now for the last 20 years; my professional authority isn’t as sacred as it used to be. I can’t say anymore that’s it, that’s what I see, this is what we know and the patients are trusting and believe that we know best. It’s no longer like this.” (Sommerhalder et al., 2009 [47]).

The patient-HCP relationship

• “It’s just helped me have … more of a conversation with my doctor rather than just being, you know, have a one-sided, just listening. I feel like I can be more active in that interaction.” (Rupert et al., 2014 [33])

• “You just have to be really open to the fact that they’re [patients] going to tell you things you didn’t know and that’s great. “Oh I hadn’t seen that before. That might be useful for me with other clients”. So I definitely feel it’s more of a partnership …” . (Townsend et al., 2015 [38]).