Title: Co-production and testing of an online resource to support the diagnosis and self-management of migraine
Funder: Department of Health and Social Care

Abstract: Background Despite often high levels of disability associated with migraine most adults with migraine have never consulted their GP. Around 70% of people that visit their GP with headache do not receive a formal diagnosis. It is often these people that turn to the internet for healthcare information. We propose adapting some of the key outputs from Chronic Headache Education and Self-management Study (CHESS) to produce an easy to use online platform of resources for people living with migraine. Using co-production we will work with people with migraines, clinicians, health service providers, designers and migraine charities to develop and test these new resources. Aims and Objectives To co-produce and test an online resource to support the diagnosis and self-management of migraine. Development work plan First, we will hold an online key stakeholder meeting for people with migraine, clinicians and service providers to find out what resources people want, if and how resources we have from CHESS might meet these needs, and any potential obstacles and enablers to successful implementation of the new resources. We will present findings from our updated systematic review of diagnostic and classification tools for headache disorders at an online consensus meeting. The meeting will be attended by people with migraine and health professionals and we will use nominal group technique to gain consensus on the key questions to be included in the development of our online migraine diagnostic support tool. At a separate meeting we will present materials from CHESS and examples of online self-management resources for migraine to people with migraine, health professionals, health service providers, design and web specialists and headache charities. We will then use this as a platform to co-design the format, structure and content of the new online e self-management material. Following the consensus meeting and co-design meeting, the research team will work with a design and web specialist to create the new online materials based on what was agreed in the meetings. Around 10-15 people with migraine will test the webpages for us and provide their feedback. We will present the feedback to those that attended the stakeholder meeting to further refine the resources if indicated, and to agree on a strategy for implementation. Once the web content goes live, we will do a simple evaluation of its usage and usefulness, including basic user feedback. Timelines for delivery - 12 months Anticipated Impact and Dissemination Our charity partners the National Migraine Centre have agreed to host and to maintain the resource on completion. Having the new content on a headache specific website will hugely increase accessibility to the resources for people seeking advice about their headaches. The new migraine diagnostic support tool will help improve the diagnosis of migraine and management of the condition. The new self-management resources will provide evidence based information to help people living with migraine manage their condition more effectively.

Lay abstract: What are we trying to do? We want to develop new website material to help people with migraine. This material will allow people to check if they have migraine and direct them to information to help them manage their migraine. We will develop this material together with people who have migraine. Why Is this important? Many people with migraine do not have a diagnosis, and many of those with a diagnosis do not get appropriate treatment. Often people with headache use the internet for self-diagnosis and treatment advice. It is important that the information people seek is good quality and accurate and developed with the needs of people with migraine in mind. How are we going to do it? We want to build on work we have done previously as part of the Chronic Headache Education and Self-management Support study (CHESS). For the study we developed a tool to help identify different types of chronic headaches and a support programme to help people learn strategies to manage their headaches better. We will adapt these resources so they can be used by people with migraine and have them available on a website. First, we will meet on-line with people with migraine, health professionals and people who provide services for migraine to find out what resources people want and how resources we have from CHESS might meet these needs. Next, we will assess studies that have previously tried to diagnose migraine and present what we find at an on-line meeting to people with migraine and health professionals. Together we will decide which questions are important to include in our online headache diagnostic support tool. We will hold a further meeting where we will present materials from CHESS and examples of existing online self-management resources for migraine to people with migraine, health professionals, health service providers, design and web specialists and headache charities. Together we will decide what self-management resources are important to include and how best to present them. We will work with a design and web specialist to create the new online materials based on what was agreed in the meetings. We will ask 10-15 people with migraine to help us test the new materials and provide feedback and present this back to all the key stakeholders before the new website material is launched. Patient and public involvement People with migraine will be key throughout the development process to make sure that all materials are what people with migraine want. There are also two people with migraine who are part of the study team to help ensure that all aspects of the work are clear, acceptable and relevant to people with migraine.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL