1. UK Community Advisory Board (UK- CAB) HIV treatment advocates network Introduction to Trials and Research Robert James, Birkbeck College, University of London

2. What I will do Why look at research and trials Types of research Types of medical evidence Interpreting studies

3. Why look at research? 1) To know something is real 2) To know when something is not true especially something that seems logical 3) To justify arguments you make All about evidence

4. Aren’t we all different though?

5. Or are groups of us really the same?

6. Similarities within differences Sunderland vote share

7. Similarities within differences Sunderland vote share change since 2010

8. What sort of research? Scientific Social Science

9. Types of research Quantitative or qualitative ‘Hard’ science or ‘soft’ science Social science and medical science It is all a way of trying to find an answer that is more than just an opinion

10. Scientific Methods Is not a single thing Finding the temperature for boiling water How do wildebeest attract a mate?

11. Social science methods Many different methods Observation, interviews, surveys, statistics, ethnographic, semiotics, conversation analysis, etc A whole subject of methodology The search for meaning

12. Medical Research What are the best drugs, treatments, care Is the finding believable? statistically justifiable other research

13. Evidence based-medicine

14. A case study A study of one or a few individuals E.g. The first ‘Berlin patient’ Treated in primary infection with ddI, Indinavir and hydroxyl urea in 198 for 6 months Stopped treatment at own request 15 years VL<1000, mean CD4 792 Jesson et al NEJM http://www.nejm.org/doi/full/10.1056/NEJMc1308413http://www.nejm.org/doi/full/10.1056/NEJMc1308413

15. A cohort study A look at what happens to a real group of patients Partners study – risk of HIV transmission though unprotected sex while undetectable 586 heterosexual and 308 gay male couples 22,000 shags (vaginal); 21,000 shags (anal) 0 linked transmission http://i-base.info/htb/24904

16. Randomised Controlled Trial (RCT) An attempt to have only one possible cause for difference between results

17. The systematic review Bring together the evidence and then draws conclusions

18. A simple meta analysis http://www.bbc.co.uk/news/events/scotland-decides/results

19. A systematic review and meta analysis Intimate partner violence (IPV) and engagement in HIV care among women Thirteen cross-sectional studies Data from 5 used to determine conclusions “IPV is associated with lower ART use, half the odds of self-reported ART adherence and significantly worsened viral suppression among women.” AIDS (2015) http://www.ncbi.nlm.nih.gov/pubmed/26353027

20. Problems with research

21. Research not done ‘Absence of evidence is not evidence of absence’ There have been no RCTs of parachutes to prevent injury, see Smith 2003, BMJ 2003;327:1459 In 2013 A Cochrane systematic review of HCV trials found that there was not enough evidence to say being cured was good for you

22. Sometimes you don’t get the answer? Travel for HIV care in England: a choice or a necessity? “This analysis cannot definitively ascertain whether the quarter of HIV-infected patients who travelled beyond local services did so out of choice or necessity.” HIV Medicine 12, 361-366. 2011. S Huntington, T Chadborn, BD Rice, AE Brown and VC Delpech

23. Sometimes you don’t get the answer? Travel for HIV care in England: a choice or a necessity? “This analysis cannot definitively ascertain whether the quarter of HIV-infected patients who travelled beyond local services did so out of choice or necessity.” HIV Medicine 12, 361-366. 2011. S Huntington, T Chadborn, BD Rice, AE Brown and VC Delpech

24. Vested interest and biases? Who funded it? Who published it? Is it a press release? Who wrote it? How was it done? Is it logical?

25. Some of the funders of research in HIV

26. Hiding data or boosting shares Press releases are becoming a more common way of pharma companies releasing data

27. A study of HIV care… or bias? Nurse Prac82 40 78 63 89 71 52 70 HIV Dr83 40 75 47 87 62 49 69 Inf Dis Dr84 37 73 53 86 56 52 66 General Dr75 30 73 49 84 52 41 57 Bold means quality was significantly worse than nurses (p<0.05)

28. What the paper says “The performance of Nurse Practitioners in caring for patients with HIV was similar to that of physicians trained in infectious diseases and general medicine HIV experts for 6 of the 8 quality measures that we examined and was superior to that of HIV expert physicians for the other 2 quality measures. Nurse practitioners performed statistically significantly better than generalist non–HIV experts on 6 of the 8 quality measures.”

29. Who wrote it? “The authors concluded that the quality of HIV care provided by nurse practitioners and physician assistants was similar to that of physicians with HIV expertise and generally better than that of physicians who were not considered HIV experts.” Commentary on www.medscape.com a website for Doctors.www.medscape.com Wilson et al, ‘Quality of HIV Care Provided by Nurse Practitioners, Physician Assistants, and Physicians’

30. As you understand research You will justify your arguments You will demonstrate things that are wrong You will know how strong the evidence is You will know when the authors cheat You will be a better treatment advocate

31. Thank you

32. 3 types of research for you A medical study on starting ART late A social science study on HIV stigma A piece of guidelines on switching HIV therapy

33. The questions to answer Are the conclusions/recommendations right? What other conclusions are possible? How can you use findings?