Expert patients
What is often the problem with academic research? It is led solely by researchers.
在研究人员甚至不知道存在之前，人们就开始研究自己的状况，从而开始研究自己的病情。从本质上讲，与长期共同的人一起成为专家。长途跋涉看着研究人员'重新发明轮子'，重新发现有关他们自己已经知道的长期卷的基本事情。现在，长途跋涉被排除在自己的叙述之外。
研究人员需要倾听专家的聆听 - 每天骑着漫长的共同“过山车”的专家，以提供真正有意义和有用的支持。
Peer support
In the early days of the pandemic, in the absence of professional support, long haulers started their own在线支持小组。They created virtual groups to reassure and support each other through sharing knowledge and validating experiences. This peer support model dates back to early civilization. It is a natural phenomenon that occurs in most communities when groups of people are going through the same difficult situation. It is a means of understanding and accepting a situation, in relation to the experience of others.
“The Hope Programme for Long COVID is a great learning resource for patients. Early intervention is the key to helping people cope”
〜Garry Loftus〜
共同设计
我们的research team at Coventry University has over 30 years’ experience of co-designing peer-supported self-management programmes. We work alongside people with lived experience of different health conditions. Through interviews and focus groups they tell us how best to support their specific needs, and we convert these suggestions into evidence-based self-management tools. Participants are free to choose when, how and what to engage with in the Hope Programme, effectively creating their own individual support package.
“我知道该课程已交付给许多人，但感觉很个人”
〜Garry Loftus〜
我们还培训了成千上万的同伴促进者，以支持与之相关的人们的需求多发性硬化症，，，，cancer，，，，cardiovascular disease and慢性疼痛，，，，and for those supporting others, such as carers, healthcare professionals, and theparents of autistic children。
“听到您以前的课程以及您如何参与设计过程的如何让我信任团队。非常重要。”
〜Garry Loftus〜
希望很长
Building on our embedded co-design culture, we have taken a transformative, patient-centered approach to Long COVID research. We have a close partnership with a social enterprise company,希望社区CIC，，，，which was co-founded by four patients andProfessor Andy Turner。这种合作伙伴关系使我们可以立即访问数字平台，使我们能够与我们的生活经验专家快速共同设计和用户测试的原型课程。
我们已经为长期条件（希望计划）的人重新使用了我们的一门课程，共同设计了基于证据的内容和与患者的活动，以满足长期共同患者的特定需求。这种创意的“升级”使我们能够在几周内启动定制课程，而无需“重新发明轮子’。
Trial and improvement
我们的第一组参与者给出了关于长期共同计划的希望和实用性的压倒性积极反馈。该课程为参与者提供了自我管理的常见症状，例如疲劳和脑雾，并接受长期兴趣的新生活方式。
“起搏已成为我最好的朋友。强制休息的时期实际上是一个完美的运动，使我的身体康复和康复。我必须学会对自己友善。”
〜Garry Loftus〜
初步数据表明，从基线到课后的心理改善令人鼓舞。平均而言，参与者报告的心理健康状况提高了16％，自我效能感增加了23％，或“自我管理的信心”。当我们收集更多数据时，我们可以开始评估它们是否对参与者的健康和福祉“临床上有意义”。
我们的当前试验将使我们比较我们课后的变化llbeing in an intervention group to those from a waitlist control group. This will help us to understand if improvements in wellbeing are due to the Hope Programme for Long COVID (intervention), or if these changes would occur naturally over time (waitlist control). Maintaining open, two-way communication channels with our participants, we will continue to share ideas and make ‘tweaks’ to improve the course.
With our experience of rapid deployment of co-designed digital interventions, we are ready to respond to the constantly evolving COVID-19 symptomatology and the changing nature of patient needs.
这项工作是由NHS慈善机构一起资助的，与大学医院Coventry＆Warwickshire慈善机构合作。
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