Inspiring People: Margaret McCartney

Margaret McCartney

A few months ago I decided to start a series of blog posts called ‘Inspiring People’. The idea was triggered by the death of Doug Altman; I wanted to tell you about the people that inspire me. Some of them will be researchers, some clinicians, some artists, some patients, and everything in between – hopefully the blog posts will give you an idea of how I approach the research that I do, where I get inspiration from, and who I respect and admire. You might even find a few new sources of inspiration for yourself too!

Today’s inspiring person is Dr Margaret McCartney; she’s a GP based in Glasgow, former columnist for the British Medical Journal, broadcaster for Radio 4’s Inside Health programme, and a fierce advocate for the NHS. She’s also the author of various books focussing on patient health and the NHS – including The Patient Paradox that I’ve read and recommended here.

Why does Margaret McCartney inspire me?

In the post about Doug Altman I talked about the first conference presentation I gave, and how Doug’s laughter and encouragement from the audience settled my nerves. At that same conference, I saw Margaret McCartney speak for the first time. Her presentation was absolutely brilliant. She talked about death, about how we as a society need to accept the inevitability of death, and how we should be working to make death a more dignified process rather than working to keep people alive at any cost. It’s weird to think that listening to Margaret’s talk caused me to really think about death for the first time; we will all die, we have all known someone who has died, and yet we avoid the subject. I left that talk feeling inspired, humbled, and ready to buy every book Margaret has ever written.

Aside from the fact that she talks about really important, and often taboo, subjects, she talks about them in an accessible way – it’s a no holds barred approach, provocative without being actively confrontational. Listening to her, you can tell that she doesn’t take any shit, but she is so honest, intelligent and eloquent, that it’s difficult to pick any holes in her argument.

The video below is one of Margaret’s fantastic talks – this one from 2014 at the Centre for Evidence Based Medicine at the University of Oxford. In this talk she’s discussing screening tests and how the process of having a screening test should not be something that patients go into without knowledge – screening tests have implications and therefore need thought and consideration before the decision to have one (or not) is made. People need to have information available to them in order for them to make the decisions that are right for them.

Find out more

If you’d like to find out more about Margaret McCartney’s work, I’d recommend starting with the sources below:

Margaret McCartney’s blog, her Twitter, and her books

Articles from the BMJ:
Medicine must do better on gender
A new era of consumerist private GP services
If you don’t pay for it you are the product
Can we now talk openly about the risks of screening?
If screening is worth doing, it’s worth doing well
The NHS shouldn’t have to pick up the bill for private screening tests
Hiding and seeking doctors’ conflicts of interest
We need another vote

If you only have time to read one thing, make it this:
A summary of four and a half years of columns in one column

As a researcher, I appreciate her brutal honesty; as a patient, I appreciate her ability to communicate; and as a tax payer, I appreciate her constant push for transparency in the way that our healthcare system is funded, skewed and tainted by industry influence and political games.

#365papers November Update

In my first post on this blog, I set myself 3 PhD-related goals for 2017. One of those goals was to read more widely, and more frequently, and I decided that doing the #365papers challenge would be a good way to do that.

This reading a paper a day is so difficult when there are a million and one things going on and a thesis to write! I think it’s safe to say that I won’t be doing the #365papers challenge in 2018, but I’m determined to complete this year’s challenge. I’ve enjoyed this month’s reading, but I’ve been doing it in little bursts – meaning I’ve only just finished November’s reading list as this blog post goes live at the beginning of December.. Next month’s reading has to be finished on time because there’s no way I’m panic reading piles of papers on new year’s eve – I’m committed to finishing this thing on a high!

November’s reading:

  1. Research Involvement and Engagement: reflections so far and future directions
  2. The impact of involvement on researchers: a learning experience
  3. Power to the people: To what extent has public involvement in applied health research achieved this?
  4. Factors associated with reporting results for pulmonary clinical trials in ClinicalTrials.gov
  5. A systematic review and development of a classification framework for factors associated with missing patient-reported outcome data
  6. The treatment in morning versus evening (TIME) study: analysis of recruitment, follow-up and retention rates post recruitment
  7. Can routine data be used to support cancer clinical trials? A historical baseline on which to build: retrospective linkage of data from the TACT breast cancer trial and the National Cancer Data Repository
  8. Network methods to support user involvement in qualitative data analyses: an introduction to Participatory Theme Elicitation
  9. A systematic literature review of evidence-based clinical practice for rare diseases: what are the perceived and real barriers for improving the evidence and how can they be overcome?
  10. Improving readiness for recruitment through simulated trial activation: the Adjuvant Steroids in Adults with Pandemic influenza (ASAP) trial
  11. The marketing plan and outcome indicators for recruiting and retaining parents in the HomeStyles randomised controlled trial
  12. Advancing ‘real-world’ trials that take account of social context and human volition
  13. Impact of a deferred recruitment model in a randomised controlled trial in primary care (CREAM) study
  14. Framing the conversation: use of PRECIS-2 ratings to advance understanding of pragmatic trial design domains
  15. Lessons from the field: the conduct of randomised controlled trials in Botswana
  16. Participant recruitment and retention in longitudinal preconception randomised trials: lessons learnt from the Calcium and Pre-eclampsia (CAP) trial
  17. A framework for the design, conduct and interpretation of randomised controlled trials in the presence of treatment changes
  18. Peak Gender Gap: Women at the top of science agencies
  19. Survey of risks and benefits communication strategies by research nurses
  20. The fractured logic of blinded peer review in journals
  21. Choosing wisely: How to fulfil the promise in the next 5 years
  22. Catch-22, clinical trial edition: Protecting women and children
  23. Insufficient recruitment and premature discontinuation of clinical trials in Switzerland: qualitative study with trialists and other stakeholders
  24. Rebranding retractions and the honest error hypothesis
  25. Participation and retention can be high in randomised controlled trials targeting underserved populations: A systematic review and meta-analysis
  26. Rheumatoid arthritis patients treated in trial and real world settings: comparison of randomised trials with registries
  27. Prevalence, characteristics, and publication of discontinued randomised trials
  28. Clear obstacles and hidden challenges: understanding recruiter perspectives in six pragmatic randomised controlled trials
  29. The intellectual challenges and emotional consequences of equipoise contributed to the fragility of recruitment in six randomised controlled trials
  30. Patient enrollment and logistical problems top the list of difficulties in clinical research: a cross-sectional survey

#365papers October Update

In my first post on this blog, I set myself 3 PhD-related goals for 2017. One of those goals was to read more widely, and more frequently, and I decided that doing the #365papers challenge would be a good way to do that.

Last month’s #365papers update was late.. again. This month though, I’m perfectly on time! I’ve caught up on reading thanks to a burst of motivation, reading for a writing retreat I’ve booked on to for the beginning of December, and reading for potential fellowship applications over the next few months. I’ve enjoyed this month’s reading more than previous months – I think it’s because I gave myself a bit more freedom to read papers that weren’t clearly and obviously linked to my PhD work, and allowed myself a bit more exploration within the subject of recruitment.

October’s reading:

  1. Writing retreat as structured intervention: margin or mainstream?
  2. ‘It’s not a hobby’: reconceptualising the place of writing in academic work
  3. Time is not enough: promoting strategic engagement with writing for publication
  4. Increasing academic output and supporting equality of career opportunity in universities: can writers’ retreats play a role?
  5. Developing a community of research practice
  6. An integrated conceptual framework for evaluating and improving ‘understanding’ in informed consent
  7. Specific barriers to the conduct of randomised clinical trials on medical devices
  8. The necessity of randomised clinical trials
  9. When are randomised trials unnecessary? Picking signal from noise
  10. The James Lind Library: explaining and illustrating the evolution of fair tests of medical treatments
  11. What is the best evidence for determining harms of medical treatment?
  12. Comparison of evidence of treatment effects in randomised and nonrandomised studies
  13. Evidence based medicine: what it is and what it isn’t
  14. The crisis in recruitment for clinical trials in Alzheimer’s and dementia: An action plan for solutions
  15. Alzheimer’s disease therapeutic trials: EU/US task force report on recruitment, retention, and methodology
  16. Participation in dementia trials and studies: Challenges and recommendations (whitepaper)
  17. Dementia trials and dementia tribulations: methodological and analytical challenges in dementia research
  18. Obstacle and opportunities in Alzheimer’s clinical trial recruitment
  19. Recruitment of subjects into clinical trials for Alzheimer’s disease
  20. Commentary on “A roadmap for the prevention of dementia II. Leon Thal Symposium 2008.” Recruitment of participants for Alzheimer’s disease clinical trials: The role of trust in caregivers, clinical researchers, regulatory authorities, and industry sponsors
  21. Recruitment rates in gerontological research: the situation for drug trials in dementia may be worse than previously reported
  22. How redesigning AD clinical trials might increase study partners’ willingness to participate
  23. Number of Alzheimer’s clinical trials almost doubles in 3 years
  24. Comparison of recruitment efforts targeted at primary care physicians versus the community at large for participation in Alzheimer’s Disease clinical trials
  25. Addressing the challenges to successful recruitment and retention in Alzheimer’s disease clinical trials
  26. Are biomarkers harmful to recruitment and retention in Alzheimer’s disease clinical trials? An international perspective
  27. Recruiting community-based dementia patients and caregivers in a nonpharmacologic randomised trial: What works and how much does it cost?
  28. Attitudes toward clinical trials across the Alzheimer’s disease spectrum
  29. Why has therapy development for dementia failed in the last two decades?
  30. Predictors of physician referral for patient recruitment to Alzheimer’s disease clinical trials
  31. Recruiting to preclinical Alzheimer’s disease clinical trials through registries

MRC Network of Hubs for Trials Methodology Recruitment Working Group Meeting – Liverpool, 5th October 2017

The Medical Research Council (MRC) has a number of ‘Hubs’ across various cities in the UK, each conducting research into different aspects of clinical trials methodology. Together, the Hubs are known as the HTMR Network – the Hubs for Trials Methodology Research Network. As part of these hubs, there are a number of Working Groups. These Working Groups each focus on a specific area of interest in the trials methodology world.

I’m part of the Recruitment Working Group, and a few weeks ago we had a face to face meeting in Liverpool. Usually we have monthly teleconferences to ensure that we all know what projects are ongoing, and there are distinct pieces of work being done by groups of people within the group too. Until now I hadn’t met many of the group members face to face, so this was a brilliant opportunity for us to work together and make decisions on where we wanted to go next in terms of projects, funding and potential collaborators.

The meeting was incredibly productive, and I came away inspired and exciting for the work we’ll do together in the future – on a side note, if you’re ever feeling uninspired by your research, make an effort to go to a conference, symposium, or big meeting with people that have similar research interests to you; I always come away feeling enthusiastic and ready to work!

Anyway, when I got back I flicked through my notes and came up with an infographic that covers (in brief!) lots of what we talked about:

I thought I’d give an outline of what this infographic shows, and when paper(s) eventually start to come out, I’ll update this blog and explain a bit more about the specifics of the research too.

ORRCA

Online Resource for Recruitment research in clinical Trials (ORRCA) is one of the Recruitment Working Group’s biggest success stories. Carrol Gamble gave a short presentationon ORRCA, explaining that it was a huge project made possible by many of the members of the group giving up there time to screen abstracts and categorise studies so that the database could be populated.I was one of the people who categorised papers etc, and I’ll be a named author on the paper when it comes out, so I’ll do another blog post with more details then. In brief – ORRCA is a database full of recruitment research, it is updated every year and means that recruitment researchers can use it as a one stop shop for relevant literature. This is incredibly useful because when you’re doing a systematic review you inevitably end up screening through hundreds, if not thousands, of irrelevant literature. Using the ORRCA database means that a lot of the irrelevant studies have already been weeded out, so the entire process of doing a systematic review could be sped up hugely.

The Cochrane Recruitment Review

Taken from Wikipedia: The Cochrane Library (named after Archie Cochrane) is a collection of databases in medicine and other healthcare specialties provided by Cochrane and other organizations. At its core is the collection of Cochrane Reviews, a database of systematic reviews and meta-analyses which summarize and interpret the results of medical research. The Cochrane Library aims to make the results of well-conducted controlled trials readily available and is a key resource in evidence-based medicine.

My PhD Supervisor has a Cochrane systematic review that looks at strategies to improve recruitment to clinical trials. The review was published in 2010, and is now in the process of being updated; it’s important that systematic reviews are updated so that we can hoover up and include data from recent studies. The short talk that Shaun gave focussed on the results of the update (it’s currently under review and should hopefully be published soon – and I’m a named author, hoorah!). Largely, the information that we have about recruitment strategies is thin, that was the case in 2010 and it’s still the case now. There’s one notable exception though – the MRC START project. MRC START was a project that offered something that we so often lack in the world of recruitment research; coordination. I’m not going to go into too much detail here, I’ll just say that when a coordinated effort focusses on answering a research question, that research question is much more likely to be answered with a satisfactory body of evidence. The updated review doesn’t provide us with groundbreaking results, but it does provide encouragement – we are seeing slow progress in the world of methodology research, and that’s better than no progress at all!

The Non-Randomised Recruitment Review

After Shaun had given his presentation on the Cochrane review, I then gave a short presentation on the systematic review that I lead. This review makes up a substantial part of my PhD project; the protocol for it was published last year. This review differs from the Cochrane review in that it includes only non-randomised studies, i.e. a bigger body of evidence, that is of a much lower quality. I’m planning on doing a more detailed blog post about this review when it is published, so keep an eye out for that – hopefully next Spring.

PRioRiTY

I don’t want to give too much away about the PRioRiTy project because I know that the paper from it has just been submitted, so again, I’ll do a more detailed blog post when it’s out. The basic outline of PRioRiTy is a priority setting project in partnership with the James Lind Alliance.

The James Lind Alliance believes that:

  • addressing uncertainties about the effects of a treatment should become accepted as a routine part of clinical practice
  • patients, carers and clinicians should work together to agree which, among those uncertainties, matter most and deserve priority attention.

They usually get involved with prioritisation work around clinical outcomes, but this was their first methodology-based project, so very exciting! The project involved lots of different stakeholders, with the aim of coming up with a prioritised list of topics for research within the area of trials recruitment. Declan Devane explained how the project progressed, and then unveiled the top 10 questions that came out of the work. This work provides a point of focus for us as recruitment researchers. As I mentioned earlier, the concept of coordinated effort is something we’ve lacked, meaning that a lot of work is happening in a lot of different areas, but the effort involved isn’t particularly focussed.

What next?

The meeting was super productive, and we’re planning another face to face meeting for the early part of 2018 so that we can work up some of the ideas that we came up with in that meeting. Ultimately, we want to have a few well thought-out project ideas, so that we can start looking at potential pots of funding for the collaborative work we’ve planned.

#365papers September Update

In my first post on this blog, I set myself 3 PhD-related goals for 2017. One of those goals was to read more widely, and more frequently, and I decided that doing the #365papers challenge would be a good way to do that.

I ended last month’s #365papers update by saying ‘hopefully September’s reading won’t be quite so late as August’s was…’ – and here I am 13 days late. September was a really busy month and though I was reading, it was snippets and abstracts and posters from conferences, rather than entire papers. I’ve now caught up – and I’m determined to make sure that October’s update is back on track time-wise!

This month’s reading has been a big mix of things because I’m working on my literature review, and also getting involved with some new projects. I’ve really enjoyed this month’s reading – when I had time to do it at least, so hopefully there’s some interesting papers in this list for others too.

September’s reading:

  1. The ethics of underpowered clinical trials
  2. The ethics of underpowered clinical trials
  3. Informing clinical trial participants about study results
  4. Women’s views and experiences of two alternative consent pathways for participation in a preterm intrapartum trial: A qualitative study
  5. Recruiting patients as partners in health research: a qualitative descriptive study
  6. Identifying additional studies for a systematic review of retention strategies in randomised controlled trials: making contact with trials units and trial methodologists
  7. Methods for obtaining unpublished data
  8. Clinical features of Parkinson’s disease patients are associated with therapeutic misconception and willingness to participate in clinical trials
  9. Health research participants are not receiving research results: a collaborative solution is needed
  10. Health research participants’ preferences for receiving research results
  11. Why is therapeutic misconception so prevalent?
  12. Recommendations for the return of research results to study participants and guardians: a report from the children’s oncology group
  13. Oncology physician and nurse practices and attitudes regarding offering clinical trial results to study participants
  14. Search for unpublished data by systematic reviewers: an audit
  15. Patient and public involvement in data collection for health services research: a descriptive study
  16. Health researchers’ attitudes towards public involvement in health research
  17. Patients’ and clinicians’ research priorities
  18. Public involvement at the design stage of primary health research: a narrative review of case examples
  19. The impact of patient and public involvement on UK NHS health care: a systematic review
  20. Involving South Asian patients in clinical trials
  21. No longer research about us without us: a researcher’s reflection on rights and inclusive research in Ireland
  22. Willingness to participate in pragmatic dialysis trials: the importance of physician decisional autonomy and consent approach
  23. How important is patient recruitment in performing clinical trials?
  24. Recruiting hard-to-reach subjects: is it worth the effort?
  25. Fundamental dilemmas of the randomised clinical trial process: results of a survey of the 1,737 Eastern Cooperative Oncology Group investigators
  26. The research-treatment distinction: A problematic approach for determining which activities should have ethical oversight
  27. Leaving therapy to chance
  28. Use of altered informed consent in pragmatic clinical research
  29. A framework for analysis of research risks and benefits to participants in standard of care pragmatic clinical trials
  30. Public engagement on global health challenges

#365papers August Update

In my first post on this blog, I set myself 3 PhD-related goals for 2017. One of those goals was to read more widely, and more frequently, and I decided that doing the #365papers challenge would be a good way to do that.

July’s post for #365papers was too cocky – I finished July ahead of schedule and then skipped off on holiday. August’s reading was not so good. It’s currently Saturday 9th September and I have only just caught up with August’s reading, so still a bit of catching up to do from the start of September!

This month when I did get round to reading I was concentrating on qualitative studies; I was doing my own qualitative analysis through August and it’s nice to get an idea how different people write and look at their own studies. I also managed to have a really good look at the literature on user-testing and think aloud protocols. On September 10th I’ve off to Cape Town for research trip – I’ll be going to the Global Evidence Summit (blog post(s) to follow for more info!), and then I’m staying in Cape Town to meet with clinical trialists based with the South African Medical Research Council. These trialists will be user-testing evidence-presentation formats – this work makes up part of my PhD project so i’ll do a more in-depth blog post another time. Anyway, hopefully September’s reading won’t be quite so late as August’s was…

August’s reading:

  1. Supporting positive experiences and sustained participation in clinical trials: looking beyond information provision
  2. How many interviews are enough? An experiment with data saturation and variability
  3. Barriers to the conduct of randomised clinical trials within all disease areas
  4. ‘We knew it was a totally at random thing’: parents’ experiences of being part of a neonatal trial
  5. What are funders doing to minimise waste in research?
  6. J Guy Scadding and the move from alternation to randomisation
  7. UK publicly funded Clinical Trials Units supported a controlled access approach to share individual participant data but highlighted concerns
  8. Why do we need evidence-based methods in Cochrane?
  9. Receiving a summary of the results of a trial: qualitative study of participants’ views
  10. The rights of patients in research
  11. Using routinely recorded data in the UK to assess outcomes in a randomised controlled trial: The Trials of Access
  12. The impact of active stakeholder involvement on recruitment, retention and engagement of schools, children and their families in the cluster randomised controlled trial of the Healthy Lifestyles Programme (HeLP): a school-based intervention to prevent obesity
  13. Evaluating the efficiency of targeted designs for randomised clinical trials
  14. Improving clinical trial efficiency: thinking outside the box
  15. Stratified randomisation for clinical trials
  16. Factors associated with online media attention to research: a cohort study of articles evaluating cancer treatments
  17. Feasibility of a randomised single-blind crossover trial to assess the effects of the second-generation slow-release dopamine agonists pramipexole and ropinirole on cued recall memory in idiopathic mild or moderate Parkinson’s disease without cognitive impairment
  18. Improving the process of research ethics review
  19. Retrospectively registered trials: The Editors’ dilemma
  20. Cancer Research UK: Taking a broad view of research impact
  21. Getting access to what goes on in people’s heads?: reflections on the think-aloud technique
  22. A description of think aloud method and protocol analysis
  23. How to study thinking in everyday life: Contrasting think-aloud protocols with descriptions and explanations of thinking
  24. Think-aloud technique and protocol analysis in clinical decision-making research
  25. The use of think-aloud methods in qualitative research, an introduction to think-aloud methods
  26. User-centred design
  27. Interpreting the evidence: choosing between randomised and non-randomised studies
  28. The use and abuse of multiple outcomes in randomised controlled depression trials
  29. The unpredictability paradox: review of empirical comparisons of randomised and non-randomised clinical trials
  30. Are randomized clinical trials good for us (in the short term)? Evidence for a “trial effect”
  31. The ethics of underpowered clinical trials (Reply – Janosky)

#365papers July Update

In my first post on this blog, I set myself 3 PhD-related goals for 2017. One of those goals was to read more widely, and more frequently, and I decided that doing the #365papers challenge would be a good way to do that.

For the first time in a few months, I’m finishing July ahead of schedule! I’m currently writing this before I go on holiday (July 28th) and it’s been scheduled and published whilst I’m enjoying myself with friends in Wroclaw or Krakow, depending on when you’re reading this.

This month I’ve really focussed on getting abstracts screened for my literature review. I still have a big pile waiting for me when I get back to the office, but it feels good to have made at least a little dent in the workload, and the task definitely made reading much easier to fit in too.

July’s reading:

  1. Marketing and clinical trials: a case study
  2. Practical issues regarding implementing a randomized clinical trial in a homeless population: strategies and lessons learned
  3. Avoidable waste related to inadequate methods and incomplete reporting of interventions: a systematic review of randomised trials performed in Sub-Saharan Africa
  4. External validity of randomised controlled trials: “To whom do the results of this trial apply?”
  5. Implementing research findings in developing countries
  6. Spending on public health cut as councils look to save money
  7. New law will force hospitals to charge foreign patients for non-urgent care
  8. Participation in a clinical trial: The patients’ point of view
  9. Clinical trial participation: Viewpoints from racial/ethnic groups
  10. Barriers to clinical trial participation as perceived by oncologists and patients
  11. Determinants of patient participation in clinical studies requiring informed consent: why patients enter a clinical trial
  12. Patient income level and cancer clinical trial participation
  13. Why African Americans may not be participating in clinical trials
  14. Why patients don’t take part in cancer clinical trials: an overview of the literature
  15. Resource implications of preparing individual participant data from a clinical trial to share with external researchers
  16. Short-term impact of celebrating the international clinical trial day: experience from Ethiopia
  17. How to design efficient cluster randomised trials
  18. Six pairs of things to celebrate on International Clinical Trials Day
  19. Development in the number of clinical trial applications in Western Europe from 2007 to 2015: retrospective study of data from national competent authorities
  20. When scientists turn to the public: alternative routes in science communication
  21. Blockchain technology for improving clinical research quality
  22. Barriers to clinical trial recruitment and possible solutions: a stakeholder survey
  23. Unsuccessful trial accrual and human subjects’ protections: an empirical analysis of recently closed trials
  24. Routine data from hospital information systems can support patient recruitment for clinical studies
  25. Impact of participant and physician intervention preferences on randomised trials – a systematic review
  26. Motivators of enrolment in HIV vaccine trials: a review of HIV vaccine preparedness studies
  27. Informed consent documents do not encourage good-quality decision making
  28. The effects of an open design on trial participant recruitment, compliance and retention – a randomized controlled trial comparison with a blinded, placebo-controlled design
  29. Provider roles in the recruitment of underrepresented populations to cancer clinical trials
  30. Recruiting subjects for acute stroke trials: a meta-analysis
  31. Minimisation: a new method of assigning patients to treatment and control groups

#365papers June Update

In my first post on this blog, I set myself 3 PhD-related goals for 2017. One of those goals was to read more widely, and more frequently, and I decided that doing the #365papers challenge would be a good way to do that.

This month’s reading has not been great – in order to get the 30 papers for June read to the level I wanted to, I ended up dedicating a few days at the end of the month to get them all complete. This month has been a busy one; I went to Evidence Live for 2 days (blog posts here for day 1 and day 2), and this month seems to have been really heavy with meetings. July is looking a bit quieter so fingers crossed I won’t end up cramming at the end of next month too!

June’s reading:

  1. Can we rely on the best trial? A comparison of individual trials and systematic reviews
  2. Science in the social media age
  3. Communicating data about the benefits and harms of treatment: A randomised trial
  4. Tweeting and rule breaking at conferences
  5. Evolution of poor reporting and inadequate methods over time in 20,920 randomised controlled trials included in Cochrane reviews: research on research study
  6. How scientists engage the public
  7. Influence of social media on the dissemination of a traditional surgical research article
  8. Recruiting adolescent research participants: in-person compared to social media approaches
  9. How are scientists using social media in the workplace?
  10. Through the looking glass: understanding non-inferiority
  11. The need for consensus, consistency, and core outcome sets in perioperative research
  12. Bias due to changes in specified outcomes during the systematic review process
  13. Confidence intervals illuminate absence of evidence
  14. Research funders pledge to make trial results publicly available
  15. US to impose tougher rules on reporting clinical trial data
  16. A methodological approach for assessing the uptake of core outcome sets using clinicaltrials.gov: findings from a review of randomised controlled trials of rheumatoid arthritis
  17. Anonymising and sharing individual patient data
  18. How to translate clinical trial results into gain in healthy life expectancy for individual patients
  19. Sparse data bias: a problem hiding in plain sight
  20. Exploring patients’ treatment journeys following randomisation in mental health trials to improve future trial conduct: a synthesis of multiple qualitative data sets
  21. What do usability evaluators do in practice? An explorative study of think-aloud testing
  22. Getting access to what goes on in people’s heads? Reflection on the think-aloud technique
  23. Think-aloud protocols: a comparison of three think-aloud protocols for use in testing data-dissemination web sites for usability
  24. Evidence based medicine manifesto for better healthcare
  25. Thinking aloud: Reconciling theory and practice
  26. Barriers to participation in randomised controlled trials: a systematic review
  27. Clinical trials: the challenge of recruitment and retention of participants
  28. Increasing recruitment to randomised trials: a review of randomised controlled trials
  29. Principles of recruitment and retention in clinical trials
  30. Engaging veterans with substance abuse disorders into a research trial: success with study branding, networking, and presence

Evidence Live Day 2 – 22nd June 2017

As I said yesterday, this week I’ve been in Oxford at the Evidence live conference. Thankfully, Oxford cooled down today and I’m much, much less grouchy as a result.Yesterday’s blog post got a really good response and people seemed to appreciate my write up of day 1, so here’s day 2 for you.

Breakfast session – The REWARD alliance and the EQUATOR network: promoting increased value of research

Iain Chalmers and Doug Altman

Weirdly, breakfast sessions at conferences are usually my favourite talks despite the fact I’m very much not a morning person. The people who attend always seem extra passionate, they’re engaged with discussion, and there’s usually croissants which helps too. This session from Iain Chalmers and Doug Altman was predictably, brilliant. I already knew about the REWARD Alliance and the EQUATOR Network before attending, but this fleshed out my thoughts on both of these initiatives. It also demonstrated that even Doug Altman can struggle to get funding sometimes – the EQUATOR Network doesn’t have grant funding currently. The discussion after Iain’s talk was particularly interesting; during his talk he said that ethical committees are actually being unethical in the way that they approve research but do not make up a big proportion of the people making a noise about research waste. An audience comment (from an ethics committee chair) followed and he made a very good point – we as researchers are often going into the conversation with ethics committees with our guards up. We’re ready for a fight before the first punch has been thrown, and it automatically puts the committee on the back foot before you’ve started. Rather than trying to invent ways to circumvent the bureaucracy we so often encounter, we need to work with ethics committees to change the system so that we can improve the quality of research, and try and make the process of doing so more easy for researchers.

Keynote session – Better data, reduced waste in research and public engagement to transform patient care

Chaired by Tessa Richards, presentations from Trish Groves, Simon Denegri and James Munro

Yet another brilliant keynote session; I think this might have been my favourite session of the entire conference.

Tessa Richards started off by talking about patient perspectives, involvement, and how patients are pushing the research agenda where we are dropping the ball. She signposted to some useful resources: www.disruptivewomen.net the #WeAreNotWaiting and #patientsincluded movements, and highlighted the lack of patient voices at Evidence Live this year. Hopefully the organisers will hear Tessa’s call and ensure we have patient representation weaved throughout next year’s programme. Trish Groves took to the floor and discussed how we can increase value in health research and make it truly able to improve patient care. The answer? Patient involvement. She highlighted the role of patient reviewers within the BMJ’s publication and review process too which I thought was brilliant.

Next up, Simon Denegri. He started his talk with a series of emojis so that was me immediately on board.. Anyway, yet another fantastic talk that focussed on patients, patient involvement, and the funding gap between research planning and research conduct. We shouldn’t be involving patients throughout every stage of our research work; it can be a waste of their time. To get the most value out of patient insight, and the most efficient use of patient time, we need to work with patients to see where they want to be involved and where they feel they can make the most difference to the research project. Simon also had a great analogy for the tokenistic patient involvement we so often see – a Ford Escort is still a Ford Escort no matter if you add a spoiler, tint the windows and lower the suspension; for you to maintain any street-cred at all, you really just need to re-build.

The session finished with a talk from James Munro from Care Opinion; a website that allows patients to give anonymous feedback about the health services they interact with across the UK. Uniquely, this platform is also linked up with healthcare professionals, this means that concerns, complaints etc can be resolved efficiently. James gave a few examples throughout his talk, one of the most simple being a patient that could not hear when the nurse called her name in the clinic – the seats were faced towards the wall and the patient was deaf in one ear, meaning she couldn’t figure out where the noise was coming from. In just 2 days contact had been made with the clinic involved, and a plan made to turn the seats around to ensure patients don’t run into this problem again. This service isn’t focussed on clinical problems, it really gives patients a voice about any aspect of their interactions with the health services; something as simple as turning the chairs to face a different direction could make the process of visiting a GP so much more comfortable. James also highlighted the need to keep an eye on the ‘small data’ in a world where big data seems to be promising us so much. Big data certainly has the potential to be great, but small data gives meaning. My personal favourite patient quote that James referenced in this talk? ‘Thank you for fixing my brain, it’s chuffing great.’

Parallel session – Clinical trials

Chaired by Jeffrey Aronson, presentations from Amy Rogers, Penny Reynolds, Heidi Gardner (yep, me!), Patrick van Rheenen and Ignacio Atal

A really interesting session that covered a broad range of topics related to clinical trials. Highlights from Amy Rogers from the University of Dundee who gave a brilliant talk, ‘Large streamlined trials – what works, and what doesn’t’. Her talk gave a brilliant overview of the challenges that pragmatic trials can bring, but also the ways that trials units manage to overcome these hurdles in order to conduct brilliant trials. Penny Reynolds’ talk was also brilliant, ‘Why academic clinical trials fail: trial ‘cemetery demographics’ and a case study’. The trials graveyard is something I seem to know quite well given that my research focusses on recruitment – trials are often abandoned due to poor recruitment. Penny’s study drew attention to the management problems that trials faced, and she hypothesised that poor recruitment is a symptom of the underlying disease of bad management.

After these two talks I then presented work on behalf of the HSRU Public Engagement With Research Group – mentioned in this blog post. I talked about our event, ‘Explorachoc’; a chocolate trial that aimed to demonstrate randomisation to the public. I took along the coloured balls we used in Explorachoc, and sweets in yellow and blue bags, and did a live demo of our event. Jeff Aronson who was chairing the session seemed to enjoy being randomised to the blue arm of the trial, which earned him a marshmallow (I did take chocolates with me but they suffered a tragic melting accident between London and Oxford on Tuesday evening, so marshmallows and jelly babies it was!).

A few pictures of my presentation taken by members of the audience:

Picture taken from the The Centre for Evidence-based Veterinary Medicine Twitter page.

Picture taken from the BMC Medical Evidence Twitter page.

Unfortunately I had to leave after this session to catch a bus to Heathrow Airport to make sure I made my flight. British Airways had other ideas though; I’m currently typing this from the Holiday Inn Express at Heathrow because my flight was cancelled due to bad weather. Hopefully I’ll finally make it back to Aberdeen tomorrow morning! I wish I’d known that my flight was cancelled earlier because the final talks looked brilliant, I did manage to keep up to date via Twitter which was great – take a look at #EvidenceLive if you want to find out more!

So that’s it, Evidence Live is over for another year! A brilliant programme filled with inspiring and thought-provoking talks, enthusiastic speakers and a beautiful setting too. This time next year I’ll be nearing thesis submission, so I may have to skip Evidence Live 2018; I’m keeping my fingers crossed that I can make the timings work because it’s one of the most down to Earth, friendly and determined atmospheres I’ve experienced at a conference.

The one thing I wish Evidence Live had this year? A doodler (I don’t think that’s the technical term). Last year Stefania Marcoli was at the conference each day, and she did live summaries including snippets of talks and quotes from attendees. This year we didn’t have anyone doing this, and I think the conference really missed it.

Here’s last year’s summary from day 1:

Credit: Stefania Marcoli