The Lancet:Commission on Health and Human Rights (2) The UN convention on the rights of persons with disabilities includes the right to information

31 March, 2024

Medical records are subject to fairly rigorous accuracy standards. The Professional Record Standard Board "was established in 2013 to develop clinical standards for health and care records. We are a community interest company and as such our core aim is not commercial. The PRSB has a robust and sustainable business model to support its open and inclusive working methods" in the UK.

The General Medical Council, Care Quality Commission, University undergraduate and postgraduate curricula and medical defence organizations all utilise medical records to achieve their respective goals. These bodies will, hopefully, continue to maintain healthcare professions' need to maintain accurate and timely personal health information. Civic society needs to wake up a little and to utilise their own personal health data more conscientiously. Currently citizens spend 3 hours 46 minutes watching their phone screens. [ https://www.independent.co.uk/advisor/vpn/screen-time-statistics ] The Independent generally citizens seek out what makes them comfortable - instant gratification. Perhaps the new digital patient will seek out information that is not so comfortable and to act on this information to achieve deferred gratification for themselves and for the civic society to which they belong to.

The UN convention on the rights of persons with disabilities includes the right to information: [ https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf ]

"Article 21 Freedom of expression and opinion, and access to information

States Parties shall take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice, as defined in article 2 of the present Convention, including by:

(a) Providing information intended for the general public to persons with disabilities in accessible formats and technologies appropriate to different kinds of disabilities in a timely manner and without additional cost;

(b) Accepting and facilitating the use of sign languages, Braille, augmentative and alternative communication, and all other accessible means, modes and formats of communication of their choice by persons with disabilities in official interactions;

(c) Urging private entities that provide services to the general public, including through the Internet, to provide information and services in accessible and usable formats for persons with disabilities;

(d) Encouraging the mass media, including providers of information through the Internet, to make their services accessible to persons with disabilities;

(e) Recognizing and promoting the use of sign languages."

The WHO Patient Safety Charter is due to be published in the first quarter of 2024 (maybe being a little delayed) and includes the right to information and the right to access the medical record and, possibly, depending on the fgina trexty, to own the medical record. Global stakeholders agree to a new charter on patient safety rights (who.int) https://www.who.int/news/item/14-09-2023-global-stakeholders-agree-to-a-...

Richard

HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data Email address: richardpeterfitton7 AT gmail.com