Oliver Sandy
Social Science Research Unit, Institute of Education, University of London, London, UK.
Eur J Gastroenterol Hepatol. 2006 Sep;18(9):935-8. doi: 10.1097/01.meg.0000230089.68545.45.
Patient groups already support funding of trials and patient recruitment for colitis research. Patient and public engagement in setting research agendas for health research more generally is growing, particularly about the effects of treatment. Patient priorities for colitis research span a wide range of interests. Opportunities exist to build on strategic alliances between patient groups, clinicians and researchers for more open debate about what research should be done and how. Traditionally, patients and their families have two roles in health research: as research subjects, providing data at the request of researchers, and as fundraisers, supporting research and researchers. These roles are readily apparent in the area of research into inflammatory bowel disease, including colitis, and Crohn's disease, on both sides of the Atlantic. Growing evidence, however, suggests that health research agendas do not always reflect patients' priorities. Welfare et al. (this issue) add to the evidence by eliciting patients' priorities for colitis research. Methods for bridging patients' views and research agendas range from social science to deliberative public debate. In the first of these, social researchers, such as Welfare et al. (this issue), elicit and interpret patients' views and compare these with current research agendas. In the second, patients are supported and encouraged to engage in debates about research, whereby they bring their own interpretations and influence to the health research community. Organized colitis patient groups, with their current interests and alliances with research, are well placed to build on the work of Welfare et al., in partnership with researchers with the aim of planning research that meets the full range of their needs.
患者群体已经支持为结肠炎研究提供试验资金和招募患者。患者和公众更广泛地参与制定健康研究的议程正在增加，尤其是关于治疗效果方面。结肠炎研究中患者的优先事项涵盖了广泛的兴趣。存在机会在患者群体、临床医生和研究人员之间建立战略联盟，以便就应该开展哪些研究以及如何开展进行更开放的辩论。传统上，患者及其家属在健康研究中扮演两个角色：作为研究对象，应研究人员要求提供数据；作为筹款人，支持研究和研究人员。在大西洋两岸，这些角色在炎症包括炎症活动性炎症性肠病（包括结肠炎和克罗恩病）的研究领域中都很明显。然而，越来越多的证据表明，健康研究议程并不总是反映患者的优先事项。韦尔福利等人（本期）通过引出患者对结肠炎研究的优先事项来补充这一证据。弥合患者观点与研究议程之间差距的方法从社会科学到审议性公开辩论不等。在第一种方法中，社会研究人员，如韦尔福利等人（本期），引出并解释患者的观点，并将这些观点与当前的研究议程进行比较。在第二种方法中，支持并鼓励患者参与关于研究的辩论，从而他们将自己的解读和影响带入健康研究领域。有组织的结肠炎患者群体，凭借其当前的兴趣以及与研究的联盟关系，非常适合在韦尔福利等人工作的基础上，与研究人员合作，旨在规划满足他们所有需求的研究。
