JMIR – Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto | deBronkart | Journal of Medical Internet Research

Abstract:  Ten years ago, in 2009, “e-Patient Dave” deBronkart delivered an influential keynote speech at the Medicine 2.0 conference in Toronto, organized by the Journal of Medical Internet Research’s (JMIR’s) editor-in-chief Gunther Eysenbach, who themed the conference around the topics of participation, openness, collaboration, apomediation, and social networking to improve health care for the 21st century—with patient participation being a major component. Many see this as a defining event within the participatory medicine movement, perhaps the beginning of a social movement, similar to the women’s rights movement, with the title of Dave’s keynote “Gimme my damn data” becoming a rallying cry and hashtag for patients demanding more access to their electronic health records. On the occasion of the 20th anniversary of JMIR (and 10 years after the keynote), we are celebrating the impact of the keynote for the participatory medicine movement and #gimmemydamndata (also #GMDD) by publishing the transcript of these initial conversations as a manifesto of patients’ rights to access their data and their right to save their lives.

 

JMIR – Open Access as a Revolution: Knowledge Alters Power | DeBronkart | Journal of Medical Internet Research

Abstract:  The slogan “Gimme My Damn Data” has become a hallmark of a patient movement whose goal is to gain access to data in their medical records. Its first conference appearance was ten years ago, in September 2009. In the decade since there have been enormous changes in both the technology and sociology of medicine as well as in their synthesis. As the patient movement has made strides, it has been met with opposition and obstacles. It has also become clear that the availability of Open Access information is just as empowering (or disabling) as access to electronic medical records and device data. Knowledge truly is power, and to withhold knowledge is to disempower patients. This essay lays out many examples of how this shows up as we strive for the best future of care.

 

JMIR – Open Access as a Revolution: Knowledge Alters Power | DeBronkart | Journal of Medical Internet Research

Abstract:  The slogan “Gimme My Damn Data” has become a hallmark of a patient movement whose goal is to gain access to data in their medical records. Its first conference appearance was ten years ago, in September 2009. In the decade since there have been enormous changes in both the technology and sociology of medicine as well as in their synthesis. As the patient movement has made strides, it has been met with opposition and obstacles. It has also become clear that the availability of Open Access information is just as empowering (or disabling) as access to electronic medical records and device data. Knowledge truly is power, and to withhold knowledge is to disempower patients. This essay lays out many examples of how this shows up as we strive for the best future of care.

 

Attitudes of North American Academics toward Open Access Scholarly Journals

Abstract:  In this study, the authors examine attitudes of researchers toward open access (OA) scholarly journals. Using two-step cluster analysis to explore survey data from faculty, graduate students, and postdoctoral researchers at large North American research institutions, two different cluster types emerge: Those with a positive attitude toward OA and a desire to reach the nonscholarly audience groups who would most benefit from OA (“pro-OA”), and those with a more negative, skeptical attitude and less interest in reaching nonscholarly readers (“non-OA”). The article explores these cluster identities in terms of position type, subject discipline, and productivity, as well as implications for policy and practice.

Call for Proposals – Open Repositories 2020

“The 15th International Conference on Open Repositories, OR2020, will be held in Stellenbosch, South Africa, from 1-4 June 2020. The organisers are pleased to invite you to contribute to the program. This year’s conference theme is: Open for all. 

In today’s world, access to knowledge by all is viewed by some as a fundamental freedom and human right. In our societies, open knowledge for all can enable sustainable development and growth on many levels. How well do repositories support knowledge in the service of society? How well do they enable local knowledge sharing and support not only academic use, but also use in education and practice? …”

 

The World Science Day for Peace and Development 2019 – “Open Science, leaving no one behind” – OSGeo

“The World Science Day for Peace and Development 2019 will be devoted to the theme of “Open Science, leaving no one behind”.  Celebrated every 10 November, World Science Day for Peace and Development highlights the important role of science in society and  underlines the importance and relevance of science in our daily lives.  Open Science is not only an issue of science being open to the research community, as in “open access” and “open data”, but refers to a science open to society.  In spite of the progress made in recent years, we are still witnessing great disparities across and within different regions and different countries when it comes to accessing science, technology and innovation (STI) and enjoying their benefits. To address these disparities and close the existing STI gaps, Open Science is an important step in the right direction….”

Animal Research, Accountability, Openness and Public Engagement: Report from an International Expert Forum

Abstract:  In November 2013, a group of international experts in animal research policy (n = 11) gathered in Vancouver, Canada, to discuss openness and accountability in animal research. The primary objective was to bring together participants from various jurisdictions (United States, Sweden, Australia, New Zealand, Germany, Canada and the United Kingdom) to share practices regarding the governance of animals used in research, testing and education, with emphasis on the governance process followed, the methods of community engagement, and the balance of openness versus confidentiality. During the forum, participants came to a broad consensus on the need for: (a) evidence-based metrics to allow a “virtuous feedback” system for evaluation and quality assurance of animal research, (b) the need for increased public access to information, together with opportunities for stakeholder dialogue about animal research, (c) a greater diversity of views to be represented on decision-making committees to allow for greater balance and (d) a standardized and robust ethical decision-making process that incorporates some sort of societal input. These recommendations encourage aspirations beyond merely imparting information and towards a genuine dialogue that represents a shared agenda surrounding laboratory animal use.

Animal Research, Accountability, Openness and Public Engagement: Report from an International Expert Forum

Abstract:  In November 2013, a group of international experts in animal research policy (n = 11) gathered in Vancouver, Canada, to discuss openness and accountability in animal research. The primary objective was to bring together participants from various jurisdictions (United States, Sweden, Australia, New Zealand, Germany, Canada and the United Kingdom) to share practices regarding the governance of animals used in research, testing and education, with emphasis on the governance process followed, the methods of community engagement, and the balance of openness versus confidentiality. During the forum, participants came to a broad consensus on the need for: (a) evidence-based metrics to allow a “virtuous feedback” system for evaluation and quality assurance of animal research, (b) the need for increased public access to information, together with opportunities for stakeholder dialogue about animal research, (c) a greater diversity of views to be represented on decision-making committees to allow for greater balance and (d) a standardized and robust ethical decision-making process that incorporates some sort of societal input. These recommendations encourage aspirations beyond merely imparting information and towards a genuine dialogue that represents a shared agenda surrounding laboratory animal use.

Frequency and format of clinical trial results dissemination to patients: a survey of authors of trials indexed in PubMed

Abstract:  Objective Dissemination of research findings is central to research integrity and promoting discussion of new knowledge and its potential for translation into practice and policy. We investigated the frequency and format of dissemination to trial participants and patient groups. Design Survey of authors of clinical trials indexed in PubMed in 2014–2015. Results Questionnaire emailed to 19 321 authors; 3127 responses received (16%). Of these 3127 trials, 2690 had human participants and 1818 enrolled individual patients. Among the 1818, 498 authors (27%) reported having disseminated results to participants, 238 (13%) planned to do so, 600 (33%) did not plan to, 176 (10%) were unsure and 306 (17%) indicated ‘other’ or did not answer. Of the 498 authors who had disseminated, 198 (40%) shared academic reports, 252 (51%) shared lay reports, 111 (22%) shared both and 164 (33%) provided individualised study results. Of the 1818 trials, 577 authors (32%) shared/planned to share results with patients outside their trial by direct contact with charities/patient groups, 401 (22%) via patient communities, 845 (46%) via presentations at conferences with patient representation, 494 (27%) via mainstream media and 708 (39%) by online lay summaries. Relatively few of the 1818 authors reported dissemination was suggested by institutional bodies: 314 (17%) of funders reportedly suggested dissemination to trial participants, 252 (14%) to patient groups; 333 (18%) of ethical review boards reportedly suggested dissemination to trial participants, 148 (8%) to patient groups. Authors described many barriers to dissemination. Conclusion Fewer than half the respondents had disseminated to participants (or planned to) and only half of those who had disseminated shared lay reports. Motivation to disseminate results to participants appears to arise within research teams rather than being incentivised by institutional bodies. Multiple factors need to be considered and various steps taken to facilitate wide dissemination of research to participants.

Q&A with Calvin Warren: Open Access and Democratizing the Accessibility of Knowledge | Authors Alliance

“Open access was unfamiliar to me when I began my academic career, and I wish I’d known about it in graduate school. I do hope the [TOME] program recruits early career scholars, who are often producing the most provocative and groundbreaking work. I’m very grateful that Emory University invested time and resources for me to publish with open access….

Open access has widened my readership, exposing my work to artists, scientists, ministers, politicians, people I hadn’t expected to read my work. When access is open, more democratic, ideas can travel without restriction. And this has been my experience….

My advice to any authors with important ideas, especially those that speak to contemporary concerns, is to consider open access. Make an appointment with open access staff and discuss the possibility of this platform. It will create unexpected opportunities. Also, publishers often consider the open access funds “book sales” so it reduces some pressure from young scholars who need book sales for career stability. In short, open access is a gift to the academy and will lead the way in democratizing knowledge accessibility.”