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

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

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

Aren’t we all different though?

Or are groups of us really the same?

Similarities within differences Sunderland vote share

Similarities within differences Sunderland vote share change since 2010

What sort of research? Scientific Social Science

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

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

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

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

Evidence based-medicine

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

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

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

The systematic review Bring together the evidence and then draws conclusions

A simple meta analysis

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)

Problems with research

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

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, S Huntington, T Chadborn, BD Rice, AE Brown and VC Delpech

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, S Huntington, T Chadborn, BD Rice, AE Brown and VC Delpech

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?

Some of the funders of research in HIV

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

A study of HIV care… or bias? Nurse Prac HIV Dr Inf Dis Dr General Dr Bold means quality was significantly worse than nurses (p<0.05)

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.”

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 a website for Doctors. Wilson et al, ‘Quality of HIV Care Provided by Nurse Practitioners, Physician Assistants, and Physicians’

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

Thank you

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

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