This is the full text of the Medical and Care compunetics article "Toward a partnership of Trust" (I would add joint responsibility, today.);
A personal view by Dr Richard Fitton, Dr Amir Hannan, Fred Webber and Yvonne Bennett
Electronic data is now theoretically available anywhere in the world at any time and at any place and - unlike doctors’ handwriting – it can be read or used by clinicians, patients and computers alike. But what should patients confide to the doctor and with whom should the doctor share this data? Hospital doctors, GPs and nurses treat patients using separate records that are unable to link with one another – so does this mean confidentiality actually reduces the safety and effectiveness of care?
A change in doctors' attitudes about sharing data is necessary – records should follow the patient around, with the patient controlling the access. Of course, there are very real issues here: for example, vulnerable people, such as the elderly or those with mental disabilities, will find it difficult to manage complicated security technologies – yet, as they are least able to represent themselves and their conditions, they may stand to benefit most from the sharing of electronic records.
So how do we build and maintain trust in electronic records? Among other things, doctors and patients need to:
be able to identify who stores, uses and manages data
to know who has seen the various parts of the records
to understand that data cannot be deleted from the record but can be hidden, quarantined or annotated
to know that some data cannot be seen at all without the patient’s consent
to know who can use the care record in the patient’s absence
to understand the clinician’s responsibility to disclose information when the public is at risk
Honesty, openness and transparency are paramount: doctors are contractually obliged to make a record of their consultations and patients should be able to see this information as soon as it has been recorded. Doctors will be able to record some data so that only they can see it. Patients may request that socially sensitive information is not shared – and third party data should never be shared without that third party’s consent. Existing legal safeguards will protect this sensitive information. Patients must be able to access their complete record in order to reduce the fear that ill-health can cause and to allow them to make informed decisions about their care.
Patients, IT specialists, clinicians, administrators and doctors need to come together to create, publish and update a new, liberal and emerging regulatory framework for the data that is to be disclosed, recorded, shared and corrected in electronic records.
About the authors: Dr Richard Fitton and Dr Amir Hannan are both GPs and members of the Record Access Collaborative. Fred Webber and Yvonne Bennett are patients who have been consulted in the creation of patient-centred medical services in the Tameside and Glossop Primary Care Trust.
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