Hi, Parvez Babel,
Thank you for sharing your story of Fahima. The story reminds me of the disability and rehabilitation conference in St Petersburg, Russia that I and a patient presented at, in 2016. The paper was organized under the auspices of the Ministry of Labour and Social Protection of the of the Russian Federation. One particular requirement for information for citizens with disability and requiring rehabilitation was information.
We presented two papers
1. The United Nations convention on the Rights of Persons with disabilities, the European Union general Data Protection and coding” and
“On line correction and negotiation of real time medical patient record by the mother of a patient with complicated disabilities in an English General practice.”
We discussed the rights of citizens, in relation to information, outlined in the United Nations convention on the Rights of Persons with disabilities. These rights include:
“Article 6: - Women with disabilities:
"1. States Parties recognize that women and girls with disabilities are subject to multiple discrimination, and in this regard shall take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms.
"2. States Parties shall take all appropriate measures to ensure the full development, advancement and empowerment of women, for the purpose of guaranteeing them the exercise and enjoyment of the human rights and fundamental freedoms set out in the present Convention.
"Article 21 Freedom of expression and opinion, and access to information
"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;
"(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.
2. “On line correction and negotiation of real time medical patient record by the mother of a patient with complicated disabilities in an English General practice.”
We examined the accuracy and completeness of a record of a child with multiple disabilities and concluded that parents should be able to contribute to recording and coding of the child’s problems list, the codes available at that time were inadequate.
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
