Introduction: Rare diseases affect more than 5% of the population in Northern Ireland (NI), with many affected adults living with more than one condition. Following publication of the UK Strategy for Rare Diseases, and consultation with a wide range of stakeholders, a NI statement of intent was published, with the subsequent launch of public consultation on the NI Rare Diseases Implementation Plan. This has led to considerable debate identifying where NI excels, where urgent change is needed, and how best to proceed in the short, medium, and longer term. Using an appropriate research framework to seek public opinion is essential to minimise inadvertent bias of results. Methods: Views on priorities for change in NI have been sought from the rare disease community through a variety of data collection tools, including a simple online survey with a free text comment box (www.surveymonkey.com), more complex surveys incorporating micro-narratives using SenseMaker® Suite, one-to-one semi-structured interviews, focus groups, and a series of open meetings. Additional information was sought regarding accessibility of information needed by adults living with rare diseases, who often describe themselves as ‘feeling isolated’. Results: Each data collection method has distinct advantages and disadvantages of which readers will be well aware. Common themes were consistently identified, including difficulty finding details for health and social care contacts, challenges accessing information in suitable formats, improving diagnosis, accessing rare drugs, and gaining information about individual care pathways. A common concern was the use of jargon and abbreviations, alongside the complexity of issues discussed, making it challenging for some individuals to make an informed response. We have demonstrated that working in partnership with relevant clinicians, academic researchers, the Public Health Agency, Health & Social Care Services, and multiple voluntary groups in NI to hold open meetings, with overview presentations followed by smaller discussion groups, may lead to changes in an individual’s or group’s inherent belief that would change their personal response to an e-consultation document. Each group discussion contained different members and was conducted several times using a different facilitator who recorded results and explained terms on request to enable improved understanding. Discussion: Empowering adults, or facilitating adults to help empower themselves, is helped by making information readily available and accessible in a variety of formats. Our data suggests that using multiple tools to seek public opinion returns the most information, however open meetings were the most cost-effective tool and gained the most positive public response enabling individuals to make informed decisions and engaging more of the rare disease community.
|Publication status||Published - 10 Jun 2015|
|Event||Northern Ireland 4th Public Health Annual Scientific Conference - Riddel Hall, Belfast, United Kingdom|
Duration: 10 Jun 2015 → …
http://www.publichealth.hscni.net/directorate-public-health/public-health-annual-scientific-conference-2015 (Link to event details online)
|Conference||Northern Ireland 4th Public Health Annual Scientific Conference|
|Period||10/06/2015 → …|