THOUGHTS ABOUT CONFIDENTIALITY AND COMMUNICATIONS IN THE HANDLING OF MEDICAL DATA October 5th 1995
COMMUNICATIONS
Communications for whom?
Patients
Professional Staff
Relatives and carers of patients.
Administraters.
The Traditional Model;
Professionals produce their own structured record. Communication of information considered necessary is made to the appropriate party. The patient and carers do not have access to the whole record. Any mismatch of selected information and patient/carer requirements of information will cause reduced outcome satisfaction. The patient is the one person who will be continuously having an interest in the structure, process and outcome of their care.
SUGGESTION.
All patients/ carers have access to the whole record. The patient has the say about the level of access.
I.e.;
1) Who can see which information
2) Which information he does not want to see himself.
This information hierarchy is controllable by computer security and can be elucidated at the beginning of the record and put up for time related review.
E.g.; The European Standard Electronic Record is being devised. A patient will be able to travel anywhere in Europe and his medical details will be available electronically. The patient can decide at the record base which information he wishes to be generally available. ( A number of patients with complicated diseases or diseases which are developing/changing quickly do not travel abroad because they know (rightly) that professionals will not know the full extent of their history, investigations and treatment). They will also not know what the patient knows and expects. (patients are all different!)
Patients Writing To Their Notes.
Patients can enter their own clinical data. Diabetics can enter their glucose levels, epileptics the number of fits, hypertensives their BP readings, etc, etc. They could also enter their own text about how they feel. There is evidence that patients talk more openly to a computer than to humans about psychological problems.
Changing The Traditional Autocratic Mode of Medicine.
At present the professionals deal with patients as primary school teachers do in a class. The patient's autonomy is removed and he/she must do what they are told to do by the professional carer. This is fine if the professional matches the plan perfectly to the patient and if the plan is communicated perfectly to the patient. This rarely happens - not least because only a small part of the information is given to the patient. (see "patient centred medical centre" ) Changes in the condition or complications which occur and have not been explained to the patient produce further need for the patient to take professional advice. Full shared plans and clinical details and natural histories would allow better future patient responses to crises and changes.
Confidentiality.
Doctors to nurses, psychiatrists to doctors, social workers to doctors are always assumed to be paramount in importance. These areas of confidentiality reduce efficiency enormously in all areas of management. Psychiatry is probably the best example. The literature is full of examples of the worst outcome for patients because of lack of communication between carers.
Communication is meant to be always confidential. If the outcome is severely compromised by confidentiality could not a temporary suspension of full confidentiality be negotiated with patients and their guardians/families and re-negotiated when the patient is well?
The change in level of confidentiality could be recorded and sustained electronically.
Terminal care leads to similar problems. Delays and omissions in recording and communicating what patients wish to know and actually know prevent certain options being considered in their management. The decisions to be made about the care of the disabled and failing elderly patients in the community or elsewhere delay or prevent appropriate decision making. Data about social activities and medical and psychiatric factors concerning have to be matched up. "Confidentiality" of information prevents this.
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
