The Health care data sharing rule and its roots at Boston Children’s Hospital – Discoveries

“Are you sick of health care systems not communicating with each other? Do you wish you could access more of your medical information — or your patients’ information — online? Do you ever wonder whether a health pattern you see is part of a larger trend? Two key developments have advanced the vision of seamless, secure exchange of electronic health records (EHRs) among health care institutions and patients.

That vision includes being able to learn from our data at a population scale. Through federal regulations issued this year, it will finally become reality in 2022. And the vision began at Boston Children’s Hospital more than a decade ago….”

OpenNotes – Patients and clinicians on the same page

“OpenNotes is the international movement promoting and studying transparent communication in healthcare. We help patients and clinicians share meaningful notes in medical records. We call these open notes….

OpenNotes is not software or a product. It’s a call to action.”

 

Federal Rules Mandating Open Notes

“Taking effect in April, 2021, rules implementing the bipartisan federal Cures Act specify that clinical notes are among electronic information that must not be blocked and must be made available free of charge to patients. To meet the interests of some patients, the rules allow specified exceptions….”

A model Open Access journal for researchers, practitioners and patients | Plan S

“Having worked to promote openness of research findings for some considerable time, it’s great to come across examples that illustrate why you’re making all the effort. The Journal of Patient Experience (published by the Association for Patient Experience/SAGE) uses a publication model that demonstrates an excellent use case for openness. This journal describes itself as: Giving voice to our patients and our providers, the Journal of Patient Experience (JPE) is an open access, peer-reviewed journal which focuses on presenting advances and applications that impact the patient experience….”

DECLARATION TO IMPROVE BIOMEDICAL & HEALTH RESEARCH

“We are an international group of researchers and patients who believe that:

it is ethically untenable to remain complicit in the crises that undermine science,

there are simple measures which can improve the quality and openness, and

the public and patients have a right to full access of the research they fund….”

Why Do Medical Journals Exist in the 21st Century?: Some Thoughts on the Next 5 Years of JACC: Basic to Translational Science – ScienceDirect

“However, with the current trends toward depositing new scientific work on pre-print servers, the proliferation of opportunistic for-profit open access journals, and the dizzying array of social media platforms that provide information in real time, I believe that it will be increasingly hard for journals to be all things to all people all of the time. However, that does not mean we should not lean in….

Accordingly, there is still a need today for a medical journal that is completely dedicated to bringing the fruits of fundamental scientific discoveries to patients….”

Plain Language Summary of Publication articles: helping disseminate published scientific articles to patients | Future Oncology

“Future Science Group (FSG) is keen to recognize and promote the vital role of patients in medical and scientific research, and as such, has introduced a new article type to its collection – the Plain Language Summary of Publication (PLSP). The present issue of Future Oncology features, as the first in this series, a standalone, peer-reviewed, open access PLSP article [6], which provides a visually enriched summary of a recently published research article [7]. PLSP articles are written to be read and understood by patients, patient advocates, their family members, friends and caregivers. The article will also enable other non-specialist clinicians, research scientists, decision-makers and a range of professionals in the health care community to gain an understanding of the research presented.

PLSP articles are written under the assumption that the audience has no background understanding of the study, medical terminology or clinical research in general. Each PLSP, however, will have a different style depending on the subject matter and a ‘personalized’ approach to writing each PLSP will be necessary in order to meet the educational requirements of the intended audience. For example, in the case of rare diseases, where patient readers are often well informed about the subject, a more ‘technically written’ PLSP may be considered. We recommend that all authors planning to write a PLSP first review the PLSP toolkit developed by Envision Pharma with support from PFMD, along with our own author guidelines [8]….”