Helen Macdonald: Better guidance in a crisis—efficiency, transparency, and trust

Large amounts of guidance are emerging, ranging from how to diagnose and manage people with symptoms of covid-19, to guidance on escalation of care for those who are unwell. Those writing this guidance likely deserve some of the public applause being offered to healthcare workers, given the volume and speed of their work. In March, the internet briefly buzzed with a recommendation to avoid NSAIDs in covid-19, due to the potential for harm. NSAIDs are old news now, and relatively minor, but as guidance on more challenging topics emerges, there are ways that those producing guidance might improve efficiency and transparency, and build trust at a difficult time.

Efficiency—It doesn’t make sense for many countries to search for and review the same evidence. But within hours of the first messages on NSAIDs there were multiple and varied recommendations from different people and organisations. In England, Steve Powis, medical director of NHS England, wrote to healthcare workers (17th March) with an interim recommendation, and said that the Committee of Human Medicines (an advisory body of MHRA) and NICE would also review the evidence. How could workload like this be better coordinated and shared? Are there ways that international, national, or regional organisations, and professional societies could work more closely with each other and with the World Health Organization (WHO)?

Transparency and trust—Readers can best judge the trustworthiness of the recommendations if they can easily identify some key points: Have the relevant people been involved? How were the recommendations put together (was guideline methodology used?) What information or evidence was considered? What was the rationale behind the recommendation? For NSAIDs, there was a lack of transparency and clarity in some key areas and some sources were identified as fake news. As recommendations emerged it was unclear who had made the recommendation, and whether it was based on one person’s opinion, an organisations’ response to the guidance of others, a verdict based on an evidence summary, or whether some guideline process had been followed. Guideline makers could also share whether they have compromised on their usual quality, for speed, in a crisis. 

Recommendations should be clearly substantiated. Reading and understanding the rationale may help readers to see why guidance on the same issue might vary between organisations. In the case of NSAIDs, Ireland and England both provided some rationale. The Irish authorities found no clear evidence for harm and so continued to advise paracetamol or ibuprofen for symptoms of covid-19. However, Steve Powis, medical director of NHS England (writing to healthcare professionals 17th March) said there was some indirect evidence from SARS 1 which suggested a link between NSAIDs and pneumonia, so he advised those with confirmed or suspected covid-19 to use paracetamol instead. 

An area that looks set to be important in the UK over coming days and weeks is guidance about which people with covid-19 are more (and less) suitable for escalation of care into hospital and high dependency units. In these cases it is even more important that any guidance is efficient, transparent, and trustworthy. In the UK, the Guardian reported the case of a Welsh GP surgery who upset some patients by recommending that people with serious illness complete a do not resuscitate order in case their health deteriorated after contracting coronavirus. The GP surgery who wrote to patients “directed the Guardian to the Cwm Taf Morgannwg University Health Board, which said the recommendation that vulnerable patients complete DNACPR forms was not a health board requirement.” The NHS health board and surgery apologised. It is unclear whether the communication described was in response to new or existing guidance, however it highlights the need for openness and careful communication to maintain trust.

What seems clear is that new guidance on policies such as escalation of care should be made collaboratively with a range of healthcare professionals, evidence experts, ethicists, patients and the public. They should be produced in a coordinated manner so that regional variation is minimised. They must be clear about alternative management for those less likely to benefit from admission or intensive care, and be compassionate and deliverableincluding in the community. Finally, they should be shared clearly and publicly. The Royal College of Physicians, supported by the Royal College of General Practitioners and other medical colleges and societies recently put out ethical guidance. Some of the principles mentioned in their ethical framework include; inclusivity meaning decisions taken with stakeholders and their views in mind; transparency and the need for decisions to be publicly defensible; the importance of responsiveness and flexibility in a pandemic including opportunities to revisit decisions as new information emerges.

There is no doubt that covid-19 highlights tensions in the way we give advice or make guidance, particularly given the need for speed, the uncertainty of evidence, and the ethical dimensions of decision making where resources may be scarce. However, it also provides opportunities for people to work more collaboratively and openly to generate efficient and transparent guidance which healthcare workers and the public can trust and turn to in hard times.

Helen Macdonald is UK research editor, The BMJ.

Competing interests: Since 2015 I’ve been leading BMJ Rapid Recommendations project with external partners the MAGIC Foundation.