Tag Archives: research

SAPC Dangerous Idea: funding research through Kickstarter

SK twitter photoSarah Knowles (@dr_know) is a Research Fellow at the University of Manchester. Her interests are mental health, applied health services research and patient and public involvement and engagement.

Since 2012, the Society for Academic Primary Care has run a competition at their Annual Conference called the Dangerous Idea Soapbox. The soapbox offers primary care clinicians and researchers a platform to share a dangerous idea that they think needs to be heard by the Academic Primary Care community. Submissions are judged prior to acceptance based on how challenging and cutting edge they are. Those chosen are presented through lightning pitches (2 minutes, 1 slide) in the Soapbox session, after which the audience can debate the ideas presented with the speakers before a final vote to decide that year’s most dangerous idea.

In 2015, I presented my idea that “Health research should be crowd funded through Kickstarter”, inspired by conversations with patients and members of the public involved in research, to challenge the audience with the idea that publicly funded research should have public backing before we’re allowed to get our hands on the money.

Kickstarter is a crowdfunding platform. You don’t have a product available which people choose and you then sell, like you would in a shop. Instead, you ask for investment up front from potential ‘backers’ and if you don’t get enough promised custom then your product does not get made. You have to make a pitch, which outlines what you intend to produce, convince people to invest in you, and you have to get the necessary number of backers within a time limit.

What if, after passing peer review, rather than being given the funds for your research, you had to make a pitch on a platform like this? What if we had to ask patients to commit to our project and only if we got enough support would the funds be released? Patients after all, as taxpayers, are paying for this research and this would give them an explicit vote with their cash

This idea is actually very consistent with current policy and with the current philosophy funders claim to have, which claims a patient driven research agenda, supporting research that reflects patient priorities, and conducting research that engages patients. So let’s put our money where our mouth is and give patients the purse strings.

Yet, despite this being a natural evolution of our claimed approach, most people I’ve mentioned it to have thought this was crazy or it sent them into palpitations – and that’s why this is a genuinely dangerous idea. This idea provokes some difficult thinking. It forces us to ask whether we really want patient-driven research – and if not, why not? Do we not trust them with the money, because we don’t trust the public to know what research is needed? Or do we not trust ourselves to communicate to the public what research is needed and justify why our studies should go ahead?

It’s also dangerous because it would carry genuine risk. If you don’t do a convincing pitch and win over sufficient patient backers, you don’t get access to the funds. But there’s a motto that’s used in Silicon Valley that I think is apt here – Fail Faster. Maybe if you can’t drum up support in advance, you need to stop and reconsider your research plans. Think about the 45% of publicly funded trials which fail to meet recruitment targets once they’re up, running, and spending public money.

This kind of patient supported research might actually help with exactly those problems of recruitment and retention. Think of platforms run by and with patients, such as PatientsLikeMe. Patients choose what they want to research, and the site has 250,000 ‘data donors’ engaged and participating in studies – how many trials can claim the same? This model would therefore not only bring to life the idea of ‘patient driven research’, it could herald a new way of working with patients, for patients, sharing ideas and sharing responsibility, with their commitment to help us see research through.

The SAPC (@sapcacuk) will be holding their 45th annual scientific meeting on the 6-8th July 2016 at Dublin Castle.

 

Altmetrics: now available for BJGP articles

Altmetrics_promo_homepage_newerThe world of scholarly publishing is changing rapidly, partly in response to digital publication, and also with more focus on the dissemination and implementation of published research. Traditional bibliometrics, such as the impact factor, have been used to measure aggregated citation rates as a proxy measure of journal quality. There is now more interest in looking at article-level and author-level metrics.

Peer-review publication is one component of an ‘ecosystem’ of dissemination, which includes, for example, citations, news and media coverage, discussion on social media and websites, and inclusion in practice guidelines. These new metrics – ‘altmetrics’ – defined as anything that is not a citation, can be captured in a number of ways.

The BJGP has launched the Altmetric donut, a colourful, arresting image which depicts the various media which have paid attention to a given article, with a numerical score reflecting the number of ‘mentions’. The Altmetric buttons, appearing within the ‘Info’ tab of each article, are not substitutes for traditional bibliometrics, but we think will become a useful addition to understanding how research results ‘get out’ and are incorporated into practice.

Cannabis effects and future health policy

IMG_0151Roy Robertson is Professor of Addiction Medicine at the University of Edinburgh.

The paper Cannabis, tobacco smoking, and lung function: a cross-sectional observational study in a general practice population was published in the BJGP this week. Access the full paper here.

Cannabis and its effects on health are complicated and wide ranging. Like other drugs with an impact on multiple systems there is a considerable literature about negative features and, as with alcohol when much of the measurable effect is the reason for its ingestion, there are mixed views about its value. Added to the balance of benefits versus damaging side effects is its illegality, at least in most administrations. This is clearly changing in several countries and will allow a naturalistic experiment to be evaluated over the next few years. An upcoming United Nations debate in 2016, sponsored by Mexico and Uruguay, will further expose the legal control system to change and may revolutionise the availability in many western countries including the UK. At the present time it looks like cannabis use may well increase over the next decade and, if commercial interests enter the frame then there may well be a much broader range of people participating in its use. The possibility of major manufacturing and marketing companies taking control raises many spectres for medical services used to managing the ravages of alcohol.

For medical people the damage caused by cannabis is increasingly evident. Dependency, behavioural problems and mental health issues have dominated the debate but respiratory effects are recognised and the combination with tobacco clearly is a toxic mixture. As a generation of individuals who have used cannabis reach middle and later life cumulative effects may well become evident and the damaging effects of several decades of use may increase. Making a causal relationship between cannabis and increased incidence of lung cancer and chronic obstructive airways disease is difficult without a cohort study and to try to attribute an increased caseload to the increased effects of tobacco brought about by cannabis dependency requires skilful interpretation of datasets.

[bctt tweet=”For medical people the damage caused by cannabis is increasingly evident.”]

As ever with public health policy decisions have to be made on the basis of data accumulated and evidence pointing in a clear direction. Possibly more urgent is the need to have a direction of travel. This is something governments need to put in place before the regulatory landscape changes. It would therefore seem sensible to convene a discussion on reducing cannabis related harm and to establish an evaluation framework which might give important answers over the next few years and longer. This is never a comfortable or popular area for politicians so pressure will need to come from elsewhere. At present the main lobbying groups are towards decriminalisation and increased availability but the importance of scientific evaluation and monitoring of change needs some leadership.

Quality indicators for child health in the UK

Peter_Gill_Peter Gill is a paediatric resident at The Hospital for Sick Children in Toronto, Ontario and an Honorary Fellow at the Centre for Evidence-Based Medicine at the University of Oxford. Follow Peter on Twitter @peterjgill

In the December 2014 issue of the British Journal of General Practice, several colleagues and I published a set of paediatric quality indicators for UK primary care.[1] The paper represents the main findings from my doctoral thesis completed under the supervision of Prof David Mant and Anthony Harnden at Oxford University. It is exciting to see the paper in print (it provided a morale ‘boost’ after working a stretch of nights) accompanied by a thoughtful editorial.[2] But having returned to the ‘coal face’, I am reminded of the integral role of quality indicators in clinical practice.

Why develop indicators?

Caring for children is an important part of UK general practice yet several studies have demonstrated that care quality can be improved. However, only 3% of Quality Outcomes Framework (QOF) markers relate to children and there is no set of child-relevant indicators for UK primary care. For years, the call to develop and integrate child health indicators into QOF has fallen on deaf ears despite evidence that leaving out indicators probably has negatives consequences for care quality. Therefore, we sought to develop a set of quality indicators for children and adolescents which cover a range of paediatric care and reflect existing UK evidence-based national guidelines.

What did we do?

In just over 2000 words, the BJGP paper outlines how a set of 35 indicators were developed; it looks deceiving simple. In reality, the study is the culmination of five years of work with invaluable contributions from many (including funding bodies). First, we selected priority areas [3] after searching the evidence [4], evaluating unplanned hospital admissions [5] and interviewing GPs [6]. Second, we reviewed NICE and SIGN national guidelines relevant to children in primary care before translating key guideline recommendations into quality indicators. Third, a UK-wide panel of GPs with a special interest in child health assessed the validity and implementation of indicators using the RAND methodology.

We believe the 35 indicators have high levels of clinical support, reflect national guidelines, and could be feasibly implemented in the UK. Rather than narrowly focus on easily measurable aspects of care, we address broader determinants of child health outside of clinical guidelines (e.g. child safeguarding and professional development) and prompt GPs to critically reflect on their actions (e.g. rationale for antibiotic prescribing).

How can the indicators improve quality?

There are many ways in which the care quality can improve with implementation of the indicators. For example, the indicators may lead to the earlier diagnosis of easily missed conditions such as Coeliac disease and Type 1 Diabetes which may improve quality of life and reduce complications. In 2008, there were 6300 paediatric medication related safety incidents; the prescribing indicators may improve medication safety. Appropriate evidence-based management of common conditions such as asthma, may reduce emergency department visits and secondary care referral. Each indicator, after appropriate piloting in general practice, could potentially play an important role to improve care quality and identify which areas require increased attention.

What next?

The NHS is an exemplary model of a health system with robust primary care. But, at the risk of being cliché, any system is only as strong as its weakest link. Quality indicators, whether linked to QOF or used as an audit tool, must cover the full range of UK general practice. The on-going restructuring of the NHS may only further marginalise the care of children and adolescents whose interests are often poorly represented.

These quality indicators provide a starting point. They are a set of tools for clinicians working with children. What we need now is for individuals to pick up the tools and get to work. In the US, primary care indicators were signed into law by President Obama in 2009 through the Children’s Health Insurance Program Reauthorisation Act. Why are there not similar initiatives in the UK? Bold steps are needed to implement paediatric indicators in UK primary care.

[bctt tweet=”BJGP Blog: Bold steps needed to implement paediatric indicators in UK primary care.”]

The paper is Open Access and available at http://bjgp.org/content/64/629/e752

 

References

1.     Gill PJ, O’Neill B, Rose P, Mant D, Harnden A. Primary care quality indicators for children: measuring quality in UK general practice. Br J Gen Pract. 2014 Dec;64(629):e752-7. doi: 10.3399/bjgp14X682813.

2.     Dowell A, Turner N. Child health indicators: from theoretical frameworks to practical reality? Br J Gen Pract. 2014 Dec;64(629):608-9. doi: 10.3399/bjgp14X682585.

3.     Gill PJ, Hewitson P, Peile E, Harnden A. Prioritizing areas for quality marker development in children in UK general practice: extending the use of the nominal group technique. Fam Pract. 2012 Oct;29(5):567-75.

4.     Gill PJ, Wang KY, Mant D, Hartling L, Heneghan C, Perera R, Klassen T, Harnden A. The Evidence Base for Interventions Delivered to Children in Primary Care: An Overview of Cochrane Systematic Reviews. PLoS One. 2011; 6(8): e23051. doi:10.1371/journal.pone.0023051

5.     Gill PJ, Goldacre MJ, Mant D, Heneghan C, Thomson A, Seagroatt V, Harnden A. Increase in emergency admissions to hospital for children aged under 15 in England, 1999-2010: national database analysis. Arch Dis Child. 2013 May;98(5):328-34. doi: 10.1136/archdischild-2012-302383.

6.     Gill PJ, Hislop J, Mant D, Harnden A. General practitioners’ views on quality markers for children in UK primary care: a qualitative study. BMC Fam Pract. 2012 Sept 14;13(1):92 doi:10.1186/1471-2296-13-92.