Presentation structure

2. Presentation structure • Background • Methods • Discussion • Conclusions • Acknowledgements

3. Background E-health and patient expertise Expert Patient: ‘People who have the confidence, skills, information and knowledge to play a central role in the management of life with chronic diseases and to minimise the impact of disease on their lives’ (Department of Health, 2001: 8) E-health: ‘Use of the Internet and electronic media to disseminate health related information or services’ (Gustasfson and Wyatt, 2004)

4. Questions Research Questions • How do HIV+African women receiving treatment and care in London use the internet to find ‘medical’ information? • How does this affect their experiences of living with HIV and patient-practitioner interactions?

5. Methods Methods • Interviews • Patients • Community groups • Content providers • Focus groups • Community groups • Web link and content analysis • Thematic analysis on materials

6. Discussion Text Text Text Main uses of the internet in relation to HIV Information on health & medicine Finding & sharing experiences Online dating & relationships Medication- past, current, future Side effects Research being done Searching for symptoms, diagnoses and prognoses Nutrition and supplements

7. Discussion Exploring internet use, HIV and expertise • Exploring expertise in the relationship between online and offline information • Exploring the interaction between patient and practitioner expertise • Exploring the pragmatic and affective aspects of patient expertise

8. Discussion Internet Healthcare Practitioners Support group Media Family and friends Search Website Other Doctor Nurse Other Health adviser Friend Leaflet/ Magazine Books Family Friend HIV Physician says vitamin D deficient ‘Because it’s my health. It’s me that understands myself better than the doctor and I have to take charge of my own health. All the doctor does is to ask how are you feeling? He gives me treatment, I go home. But all the other things that I need to know, that I need to check for myself, the doctor cannot do that, he is not paid to do all that. So he will just do his own bit, so this one is my own bit, I have to check for it. Because it’s good that we have internet, it’s good that we have a lot of information on the internet, and maybe some of it is not good, but at least it will give you a rough idea. And once you have a rough idea you take the matter up to someone who knows.’ Harriet • What foods help vitamin D deficiency? • What supplements to take? • Why do you get it? Google query: ‘HIV vitamin D deficiency’ • Doctor refers to dietician Confirms with doctor that deficiency is getting better

9. ‘When I go to the Internet for some reason I trust the information. I do. Because they are different. Even if you Google, it will come up with different websites and then you read through the first one and then you read through the second one and you try and connect the information and it adds up. So simple examples like, if you enter urinary tract infection, which I did in the past, you get the same, almost the same information, signs and symptoms. You go on another one and you get the same information. Its not confusing, apart from maybe if you go into the detail like if you are looking for sort of evidence based practice, looking for actual information, they will give you journals, you know, which are quire difficult to open.’ Rita

10. HIV vitamin D deficiency example issuecrawler from Govcom.org http://www.govcom.org

11. NAM NHS THT i-BASE

12. Discussion ‘I look at new medication. I look at people’s stories. I look at you know oh [pause] how transmissions from mother to babies have been cut, you know about medication, new stuff coming up and I’m interested to know, to find out, about new medication and the future really… So that gives me hope.’ Frances ‘You feel scared. Sometimes I don’t want to look for more information about it. Yeah. If you see the side effects and you think oh my God am I going to go through this? Am I going to go through this? But some you don’t go through it. It depends on the particular individual, but some of them are scary and you say oh my God, is this what I am taking in everyday? Is this going to happen to me? But it’s helping you at the end of the day, its helping you.’ Grace ‘When I got the news I went to the internet. I read about it. I read so much. Then I got a leaflet here, there are so many here, I read the leaflets. And even now I am not on medication but I read about the medication just to, you know, because I hate information to come to me when I have no clue at all, so I usually want to be a bit ahead.  I am not on medication, but if I want I need to plan what exactly do I expect? How exactly am I supposed to feel? You know. Not like you are anxious, but you want something to happen to you when you already have information. I really don’t want information, like I didn’t know about this.’ Rita ‘It relieves me because I can search for something that I want to know. It relieves me that when I am pregnant I can search for things that I am worried about and I see the solution and then I am ok.’ Alice

13. Conclusions Conclusions • Importance of specificcontexts of care and complex information landscapes • Internet use as a form of engaging with rather than challenging medical expertise • Importance of affective dimensions of information seeking intertwined with the pragmatic ones

14. Acknowledgements Acknowledgements • Homerton University Hospital Department of Sexual Health • Newham University Hospital Department of Sexual Health • Barking University Hospital Department of Sexual Health • Dr Simon Limb • Cheryl Tawana • Dr SharminObeyesekera • Avert, Body and Soul, i-Base, NAM, Positive East, Rain Trust, Terrence Higgins Trust • All the research participants