PHCSG HC /04/11 Confidentiality and Shared Care in The New NHS Squaring circles – if possible Mary Hawking GP Dunstable England

PHCSG HC /04/11 What degree of Confidentiality is possible or desirable?

PHCSG HC /04/11 What information do Fred’s support team need? Services needed –DNs for insulin administration –Carers –Dog walker –Respite care for dog –Transport for appointments –Housework/shopping Financial assessment Single point of contact No medical information needed. Fred Age 70 Lives alone with dog Diabetes (Insulin) Amputation left leg (wheelchair waiting limb- fitting) COPD (still smokes) Depression (reactive) Rheumatoid Arthritis Peripheral neuropathy

PHCSG HC /04/11 What information do his medical support team need? He is on four pathways –DM –COPD –Arthritis –Depression He is housebound All pathways require either home visits or transport Medication interaction inevitable: what is priority? –Steroids vs DM & insulin –NSAIs vs ACE –Who decides? How should the medical care and record be organised? Fred Age 70 Lives alone with dog Diabetes (Insulin) Amputation left leg (wheelchair waiting limb- fitting) COPD (still smokes) DepressionArthritis Peripheral neuropathy

PHCSG HC /04/11 Who is providing care along the pathways? DM and complications –GP & practice team –Community –Diabetic specialist nurse –Specialists Hospital care Retinopathy screening Diabetic foot services Vascular surgery Limb-fitting Wheel chair services COPD –GP & practice team –Specialist nurse –Stop Smoking (giving up!) –Respiratory consultant –Pulmonary rehabilitation RhA –GP –Rheumatology OOH A&E and emergency admissions Who is in charge of total care? How will inadvertent harm be avoided? How is the care to be co- ordinated? What information do the various organisations involved need for:- –Direct care –Billing –Audit –Accountability/transparency –Performance and contract management How is the information to be regulated and confidentiality protected?

PHCSG HC /04/11 Use of Fred’s information Clinical Diagnoses Medication, medication history, adverse reactions Clinical narrative Investigations/results/t rends Care plans Agreed communication & management Means of ensuring confidentiality Organisation/billing Single point of contact Organise carers and aids Notify services when in hospital Respite care for dog Information needed for Fred Services requested & provided Billing arrangements Anticipating future needs Management information for PCO & service design. Information Governance.

PHCSG HC /04/11 Who controls what data? Clinical –GP practice? –All clinicians involved? –Organisations involved? –Other people’s data? –Changing management e.g. prescriptions? –Who can amend or evolve information? “Data controllers” Clinical responsibility. Organisational –Individual data –Population data –Billing data –Service management data –Retention of identifiable data –? Secondary uses?

PHCSG HC /04/11 “What is the correct amount of confidentiality?” Patient information is used for direct care & service management These cannot be provided without some patient identifiable information Aggregated information not contentious Purposes for which information needed/desired/demanded Consent issues Trust or lack of it – and who trusts whom. "You have zero privacy anyway," Scott McNealy told a group of reporters and analysts at an event to launch his company's new technology. "Get over it."

PHCSG HC /04/11 Answers to my questions when the Chair says! Wicked questions still need to be addressed…