My wife and I live in the Pennine Hills in the North West of England where their is poor mobile reception. People from the campsite nearby frequently walk down to the road by our house to find mobile reception. A lady was doing this earlier this week and we began to talk about global mobile and digital connection.
I told her about the UN ID2020 initiative which she thought was "Big Brother--ish. (*** Aldous Huxley had published in 1932 his futuristic novel *Brave New World*, in which every facet of humanity came under central control of the ultimate, despotic government. The author described some pretty amazing technological tools for the times for use in enslaving all peoples.)
There seems to be a balance between privacy and inclusion for universal health care. If, as a society, we don't know someone exists (consider refugees) we cannot offer them vaccinations, cancer screening, comorbidity management, drug surveillance etc
*Confidentiality or secrecy?*
Confidentiality that allowed no sharing of data without asking the patient at each episode of sharing (with laboratories, ambulance services, appointment booking, pharmacy requests, communications with other professional bodies), each time would reduce efficiency in many areas of clinical and administrative care management. Delays, omissions and unavailability in the recording and communicating of patient data adversely affect the processes and outcomes of care.
The medico-legal literature holds examples of poor outcomes for patients and doctors caused by poor communication between professionals and patients. Not communicating or not making available full patient data and referenced care pathways automatically to patients prevents some options being considered by patients and other parties to achieve the best patient outcome and the best patient education and motivation.
“Confidentiality”, practised as secrecy without appropriate sharing, prevents sharing of information and delays decisions about the care of disabled, dependent and failing elderly patients in the community. Terminal care and social care are also handicapped by traditional models of confidentiality as secrecy. Confidentiality is not secrecy. Confidentiality is the best use of information in the balanced best interest of the safety and privacy of patients in a trusted, contractual, negotiated, professional and transparent relationship.
We were involved in the preliminary European discussions on the drafting of the European General Data Protection Regulation https://gdpr-info.eu/
One two day meeting in London was attended by over 100 people including five European regulators but no data subjects at all. After the first day I sat down to write a data subject's wish list which I have pasted below.
Data processors and data controllers and data subjects need proof of provenance, veracity and processing of data. I hope to continue to persuade the WHO and UN to support these ethical processes of processing personal health data.
Here is the data subject paper that I sent to he Minister of Justice in Europe:
Data controllers (GPs in our particular case) should no longer be able to refuse online access to data subjects to all of their real time digital data if the technology can allow this access. (there is no section in our current DPA that deals with immediate access to digital data)
Data subjects should have the option of being part of a dynamic and ongoing process of deciding which pats of their data are sensitive.
Sensitive data (as defined by citizens as they view their data as it is being created with real time access to data that current technology allows– or later as they view it through their access rights) should be digitally coded as "sensitive" and recorded at source as processing takes place.
Data subjects should have an opportunity to be involved in the decisions that are made about the retention and destruction of their data. One option would be a statutory requirement for data controllers to approach data subjects say 6 months before they destroy personal data to see if the data subjects would like to have the data retained or to have it processed at their own expense
· Data controllers should be statutorily required to publish the details of data and parties involved in the information flows of sensitive data.
· Data controllers should be obliged to publish the details of bulk transfers of personal data that they make from one data controller to another and to automatically log which data controllers have accessed a data subject’s data. (An audit trail again.)
HIFA profile: Richard Fitton is a retired family doctor - GP, British Medical Association. 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