{"id":48463,"date":"2020-08-28T18:49:51","date_gmt":"2020-08-28T17:49:51","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=48463"},"modified":"2020-08-28T18:52:16","modified_gmt":"2020-08-28T17:52:16","slug":"rapid-co-creation-of-information-resources-for-surgical-patients-during-covid-19","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2020\/08\/28\/rapid-co-creation-of-information-resources-for-surgical-patients-during-covid-19\/","title":{"rendered":"Rapid co-creation of information resources for surgical patients during covid-19"},"content":{"rendered":"

Surgical patients are facing new territory. On the one hand they hear that admission to hospital for elective surgery carries an increased risk of getting covid-19, on the other, that delaying surgery may cause problems and that operations can be done safely provided precautions are taken. Making an informed decision is vital. In this article Mary Venn, surgical research fellow, Carrie Tierney Weir, a patient with inflammatory bowel disease, and Daoud Chaudhry, a medical student, describe how the CovidSurg collaborative spurred the development of co-produced patient information resources about the risks of undergoing surgery during the covid-19 pandemic.\u00a0\u00a0<\/span><\/p>\n

\"\"<\/a>Mary Venn: Research acted as a catalyst for patient engagement<\/b><\/p>\n

The international CovidSurg collaborative (<\/span>https:\/\/globalsurg.org\/covidsurg\/<\/span><\/a>) identified a 24% overall mortality rate in patients with perioperative SARS-CoV-2 infections in a<\/span> multicentre, cohort study in 235 hospitals from 24 countries<\/span>. [1] Postoperative pulmonary complications were far more frequent than pre-pandemic rates in these patients, occurring in 51%. These rates parallel the worst mortality rates among<\/span> community acquired covid-19<\/span><\/a> and surpass previous mortality rates demonstrated in large cohort studies of abdominal surgery in a variety<\/span> of<\/span><\/a> settings<\/span><\/a>. [2-4]\u00a0<\/span><\/p>\n

These findings underline the need to discuss covid-related complications with patients as part of the surgical consent process. Risks can be reduced, but they cannot be eliminated. [5] The findings of the first CovidSurg cohort study (locked on 30 April 2020) prompted the research team to immediately draw up draft information for patients due to undergo surgery. We also established a Patient Advisory Group (PAG) to appraise and develop information resources and a web based platform for patients and carers. Members were found via the<\/span> People and Research Together<\/span><\/a> network, which connects research groups with patients and carers who have registered an interest in supporting research. We included those with both benign and malignant conditions and a few who had experience of hospital care during the pandemic.<\/span><\/p>\n

Our opening submission to the group was a shiny eight page patient information booklet that felt \u201calmost finished.” We expected a stamp of approval on our smart graphics and catchy titles. It took some humility to watch it taken apart; both what it did not contain and our use of confusing terminology, for example, comments such as, \u201cDon\u2019t use \u2018era\u2019\u2019\u2019, \u201cwhat do you mean by recovery period?\u201d, \u201cthe calendar icon has an 8 on it, does that mean 8 days?\u201d<\/span><\/p>\n

\"\"<\/a>Carrie Tierney Weir, PAG member and IBD patient<\/i><\/b><\/p>\n

When my surgeon told me I needed major bowel surgery, I had difficulty concentrating and barely retained any of the information provided during the consultation. I believe this is a normal reaction for many patients. Now, during the covid-19 pandemic nothing is normal. Every concern is amplified. More than ever, verbal discussion at a consultation should, in my view, be supported by detailed information that patients can read and digest in our own time.<\/span><\/i><\/p>\n

When I was asked to volunteer for the CovidSurg project I was happy to do so. I have benefited enormously from the care and support of the NHS since I was diagnosed with Inflammatory Bowel Disease and I wanted to do something in return.<\/span><\/i><\/p>\n

The Patient Advisory Group I joined consists of eight people, a mix of patients and carers. Our first meeting was held by video conference in May and led by a surgical representative from the CovidSurg collaborative. We exchanged views about what information we needed to make a decision about whether or not to undergo surgery. It soon became clear that we had common views as well as substantial knowledge and experience to share. Those unfamiliar with video conferencing soon gained the confidence to participate fully.<\/span><\/i><\/p>\n

The key questions we all wanted answers to included:\u00a0<\/span><\/p>\n