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.

Advertisements

#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)