Parliament and society in Scotland, 1560-1603.

In 2 volsAvailable from British Library Document Supply Centre- DSC:D77945 / BLDSC - British Library Document Supply CentreSIGLEGBUnited Kingdo

Patient-initiated recruitment for clinical research: Evaluation of an outpatient letter research statement

Background: UK Hospital Trusts are charged with increasing patients’ research awareness and willingness to take part in research. This includes implementing strategies to encourage patient-initiated enquiries about participation. Objectives: To evaluate the impact of a research statement inserted in outpatient letters in one clinical service, and to derive suggestions on potential steps towards increasing patient-initiated recruitment. Setting: A medical outpatient clinic of a research-active hospital trust, serving an inner-city multi-ethnic population across two boroughs. Methods: Pre-intervention and post-intervention questionnaires were administered face-to-face to new patients. Questionnaires included closed questions and one open comments section. Data were analysed for frequencies, with thematic coding of open-ended responses. Results: The response rates were 87% for the pre-intervention survey and 92% for the post-intervention survey. In the post-intervention survey, 85% of patients did not notice the research statement in the letter. More than half found the statement “a little unclear,” whilst one-third considered it “clear.” Three-quarters of respondents perceived the statement to be “a little helpful.” Only one person enquired about participating in clinical research having read the statement in the outpatient letter. Conclusion: The analysis suggests that simple, single-solution approaches such as including research statements in outpatient letters are unlikely to be sufficient to significantly facilitate patient-initiated recruitment. Recruitment efforts need to take into consideration the diversity of patient constituencies including the reasons they seek health care, and how patients can meaningfully access information (research literacy)

Patient and public involvement in the early stages of clinical trial development: a systematic cohort investigation

Incorporation of PPI within the development of the outline application or specification of plans for future involvement was low. Funder requests for applicants to provide information on PPI and justification for its absence should be welcomed but further research is needed to identify the impact of this on its contributions to research. Comments on PPI by reviewers should be directional rather than state that an increase is required. Challenges facing applicants in initiating PPI prior to funding need to be addressed

Development of the ACTIVE framework to describe stakeholder involvement in systematic reviews

Objectives Involvement of patients, health professionals, and the wider public (‘stakeholders’) is seen to be beneficial to the quality, relevance and impact of research and may enhance the usefulness and uptake of systematic reviews. However, there is a lack of evidence and resources to guide researchers in how to actively involve stakeholders in systematic reviews. In this paper we report the development of the ACTIVE framework to describe how stakeholders are involved in systematic reviews. Methods We developed a framework using methods previously described in the development of conceptual frameworks relating to other areas of public involvement, including: literature searching, data extraction, analysis, and categorisation. A draft ACTIVE framework was developed and then refined after presentation at a conference workshop, before being applied to a series of example systematic reviews. Data extracted from 32 systematic reviews, identified in a systematic scoping review, were categorised against pre-defined constructs, including: who was involved, how stakeholder were recruited, the mode of involvement, at what stage there was involvement and the level of control or influence. Results The final ACTIVE framework described whether patients, carers and/or families, and/or other stakeholders (including health professionals, health decision makers and funders) were involved. We defined: recruitment as either open or closed; the approach to involvement as either onetime, continuous or combined; and the method of involvement as either direct or indirect. The stage of involvement in reviews was defined using the Cochrane Ecosystem stages of a review. The level of control or influence was defined according to the roles and activities of stakeholders in the review process, and described as the ACTIVE continuum of involvement. Conclusions The ACTIVE framework provides a structure with which to describe key components of stakeholder involvement within a systematic review, and we have used this to summarise how stakeholders have been involved in a subset of varied systematic reviews. The ACTIVE continuum of involvement provides a new model that uses tasks and roles to detail the level of stakeholder involvement. This work has contributed to the development of learning resources aimed at supporting systematic review authors and editors to involve stakeholders in their systematic reviews. This framework may support the decision-making of systematic review authors in planning how to involve stakeholders in future review

Operationalising a model framework for consumer and community participation in health and medical research

The Consumers' Health Forum of Australia and the National Health and Medical Research Council has recently developed a Model Framework for Consumer and Community Participation in Health and Medical Research in order to better align health and medical research with community need, and improve the impact of research. Model frameworks may have little impact on what goes on in practice unless relevant organisations actively make use of them. Philanthropic and government bodies have reported involving consumers in more meaningful or collaborative ways of late. This paper describes how a large charity organisation, which funds a significant proportion of Australian cancer research, operationalised the model framework using a unique approach demonstrating that it is both possible and reasonable for research to be considerate of public values

Consumer input into research: the Australian Cancer Trials website

<p>Abstract</p> <p>Background</p> <p>The Australian Cancer Trials website (ACTO) was publicly launched in 2010 to help people search for cancer clinical trials recruiting in Australia, provide information about clinical trials and assist with doctor-patient communication about trials. We describe consumer involvement in the design and development of ACTO and report our preliminary patient evaluation of the website.</p> <p>Methods</p> <p>Consumers, led by Cancer Voices NSW, provided the impetus to develop the website. Consumer representative groups were consulted by the research team during the design and development of ACTO which combines a search engine, trial details, general information about trial participation and question prompt lists. Website use was analysed. A patient evaluation questionnaire was completed at one hospital, one week after exposure to the website.</p> <p>Results</p> <p>ACTO's main features and content reflect consumer input. In February 2011, it covered 1, 042 cancer trials. Since ACTO's public launch in November 2010, until the end of February 2011, the website has had 2, 549 new visits and generated 17, 833 page views. In a sub-study of 47 patient users, 89% found the website helpful for learning about clinical trials and all respondents thought patients should have access to ACTO.</p> <p>Conclusions</p> <p>The development of ACTO is an example of consumers working with doctors, researchers and policy makers to improve the information available to people whose lives are affected by cancer and to help them participate in their treatment decisions, including consideration of clinical trial enrolment. Consumer input has ensured that the website is informative, targets consumer priorities and is user-friendly. ACTO serves as a model for other health conditions.</p