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Serious concerns about the way research is organized collectively are increasingly being raised. They include the escalating costs of research and lower research productivity, low public trust in researchers to report the truth, lack of diversity, poor community engagement, ethical concerns over research practices, and irreproducibility. Open science (OS) collaborations comprise of a subset of open practices including open access publication, open data sharing and the absence of restrictive intellectual property rights with which institutions, firms, governments and communities are experimenting in order to overcome these concerns. We gathered two groups of international representatives from a large variety of stakeholders to construct a toolkit to guide and facilitate data collection about OS and non-OS collaborations. Ultimately, the toolkit will be used to assess and study the impact of OS collaborations on research and innovation. The toolkit contains the following four elements: 1) an annual report form of quantitative data to be completed by OS partnership administrators; 2) a series of semi-structured interview guides of stakeholders; 3) a survey form of participants in OS collaborations; and 4) a set of other quantitative measures best collected by other organizations, such as research foundations and governmental or intergovernmental agencies. We opened our toolkit to community comment and input. We present the resulting toolkit for use by government and philanthropic grantors, institutions, researchers and community organizations with the aim of measuring the implementation and impact of OS partnership across these organizations. We invite these and other stakeholders to not only measure, but to share the resulting data so that social scientists and policy makers can analyse the data across projects.

Purpose – The purpose of this paper is to investigate the potential of altmetric and webometric indicators to aid with funding agencies’ evaluations of their funding schemes. Design/methodology/approach – This paper analyses a range of altmetric and webometric indicators in terms of suitability for funding scheme evaluations, compares them to traditional indicators and reports some statistics derived from a pilot study with Wellcome Trust-associated publications. Findings – Some alternative indicators have advantages to usefully complement scientometric data by reflecting a different type of impact or through being available before citation data. Research limitations/implications – The empirical part of the results is based on a single case study and does not give statistical evidence for the added value of any of the indicators. Practical implications – A few selected alternative indicators can be used by funding agencies as part of their funding scheme evaluations if they are processed in ways that enable comparisons between data sets. Their evidence value is only weak, however. Originality/value – This is the first analysis of altmetrics or webometrics from a funding scheme evaluation perspective.

The rise in the measured prevalence of autism has been accompanied by much new research and research investment internationally. This study sought to establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community. Interviews and focus groups were conducted with autistic adults, family members, practitioners and researchers to identify their priorities for research. We also captured the views of a large number of stakeholders via an online survey. There was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants. There was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives. There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.

Barral Neto, Manoel. Fundacao Oswaldo Cruz. Instituto Goncalo Moniz. Salvador, BA, Brasil. “Documento produzido em parceria ou por autor vinculado a Fiocruz, mas nao consta a informacao no documento”. Centre for Intellectual Property and Policy (CIPP), Faculty of Law, McGill University, Montreal, QC, H3A 1W9, Canada Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, H3A 0C7, Canada Tanenbaum Open Science Institute (TOSI), Montreal Neurological Institute and Hospital, Montreal, QC, H3A 2B4, Canada F1000, London, W1T 4LB, UK Diseases of the Developing World, Global Health R&D, GlaxoSmithKline, Madrid, Spain Fundacao Oswaldo Cruz - Fiocruz, Rio de Janeiro, RJ, 21040-900, Brazil Wellcome Trust, London, NW1 2BE, UK Montreal Neurological Institute and Hospital, Montreal, QC, H3A 2B4, Canada US Department of Agriculture Economic Research Service, Washington, DC, 20024, USA Health Research Board, Dublin, D02 H638, Ireland Arizona State University, Washington, DC, 20006, USA Sage Bionetworks, Seattle, WA, 98121, USA US National Library of Medicine, Bethesda, MD, 20894, USA Research England, UK Research and Innovation, Bristol, BS34 8SR, UK Jisc, Bristol, BS2 0JA, UK Queensland University of Technology, Brisbane, QLD, 4000, Australia The Lens, Canberra, ACT, 2601, Australia African Academy of Sciences, Karen, Nairobi, 00502, Kenya Utrecht University Library, Utrecht, CX, 3584, The Netherlands Structural Genomics Consortium (SGC), University of Oxford, Oxford, OX3 7DQ, UK Data Science Institute, University of Virginia, Charlottesville, VA, 22904, USA University of Cambridge, Cambridge, CB2 3EA, UK Alkermes, Waltham, MA, 02451, USA Department of Psychology, University of Virginia, Charlottesville, VA, 22904-4400, USA Center for Open Science, Charlottesville, VA, 22903-5083, USA Element AI, Montreal, QC, H2W 2R2, Canada GlaxoSmithKline, Stevenage, Herts, SG1 2NY, UK Warwick Research in Nursing, University of Warwick Warwick Research in Nursing, University of Warwick Medical School, Coventry, CV4 7AL, UK University of Wolverhampton, Wolverhampton, WV1 1LY, UK

Accessible summary • We did twelve interviews all about the times people with learning disabilities had been to hospital since March 2007. Some of them were with people with learning disabilities and some of them were with the carers of people with learning disabilities. • This article talks about what people told us in the interviews and makes some recommendations to hospital staff which we think would help improve hospital experiences for people with learning disabilities in the future. • This research should be important to people with learning disabilities because people with learning disabilities often have more need to attend hospital than other people, and so it is important that the care they receive is of a good enough standard when they are there. Summary People with a learning disability face a number of challenges when seeking access to hospital care which are often distinct from those faced by the general population. Numerous statistics indicative of these challenges are represented in the academic literature. Previous research has suggested several reasons for the continued existence of these challenges, including a lack of expertise in the provision of health care to people with learning disabilities and negative attitudes towards this population held by healthcare professionals. As a means of elucidating the hospital experiences of people with learning disabilities on Merseyside, the researcher conducted 13 semi-structured interviews – an analysis of 12 of which are included in this article. Of these 12 interviews, two were conducted with an unaccompanied person with a learning disability, three were conducted with a person with a learning disability alongside their carer, and seven were conducted with the carer or carers of a person with a learning disability. The topics discussed in these semi-structured interviews were determined by the findings of a literature search and pilot interview. Emergent themes within the interview transcripts are discussed and recommendations made for healthcare professionals engaged in the hospital care of people with learning disabilities. It is concluded that people with learning disabilities on Merseyside continue to contest with the same difficulties during hospital experiences as have been identified previously by numerous national and international investigations.

Medical research charities fund more than a third of all publicly funded medical research in the United Kingdom. In the financial year of 2012–2013, the UK's charitable spending on medical research totalled £1.3 billion [1]. The Wellcome Trust is the second-highest spending charitable foundation in the world [2] and contributed almost half of this amount by awarding £538 million in support of biomedical research, development of medical technologies, and the medical humanities [3]. With such large investments in play, funders are naturally keen to understand and learn from the impact of the work they support. At the Wellcome Trust, the sort of impact we might expect can vary widely depending on the funding programme, from the discovery of a novel biomarker for childhood pneumonia [4], to the generation of a map of H7N9 infection [5] to assist epidemic preparedness in China, to heightened public engagement with science through the development of a video game based on the principles of Mendelian genetics [6]. Attempts to capture such a wide range of research impacts require a toolbox of methods and approaches to track the reach, use, and reuse of research outputs such as journal articles, datasets, and software. Expert peer review has long been and will continue to be an important component of judgements of the quality of research. Metrics, when used properly, can both inform and complement that process [7]; bibliometric analysis of research publications and their citation impact has been used for many years to provide a proxy measure of the impact of research within the scholarly literature [8]. Though we know that the impacts of research extend far beyond the academic literature [9]—to clinicians, policy makers, educators and the general public—accessible means of gauging this impact have not been so readily available.

There has been a substantial increase in research activity on autism during the past decade. Research into effective ways of responding to the immediate needs of autistic people is, however, less advanced, as are efforts at translating basic science research into service provision. Involving community members in research is one potential way of reducing this gap. This study therefore investigated the views of community involvement in autism research both from the perspectives of autism researchers and of community members, including autistic adults, family members and practitioners. Results from a large-scale questionnaire study (n = 1,516) showed that researchers perceive themselves to be engaged with the autism community but that community members, most notably autistic people and their families, did not share this view. Focus groups/interviews with 72 participants further identified the potential benefits and remaining challenges to involvement in research, especially regarding the distinct perspectives of different stakeholders. Researchers were skeptical about the possibilities of dramatically increasing community engagement, while community members themselves spoke about the challenges to fully understanding and influencing the research process. We suggest that the lack of a shared approach to community engagement in UK autism research represents a key roadblock to translational endeavors.