E-Health Workshop Session 1: Empowering patients, carers and members of the public to look after their own health Delivering Better Health Services – The Fifth National SDO Conference Dr Henry Potts, Centre for Health Informatics and Multiprofessional Education (CHIME), University College London (UCL)

In-depth study of three e-Health approaches to the enhancement of clinical care and its delivery NHS SDO: EH95 “A study of the use of e-Health solutions in the management and treatment of disease and in facilitating change in the organisation and delivery of services.” Henry Potts 1, Justin Keen 2, Jackie Nicholls 1, David Patterson 1, Ann Blandford 1, Chris Martin 1, Tracy Denby 2 1 University College London, 2 University of Leeds

System 1: Monitoring and adjustment of anti-coagulation therapy Anti-coagulant therapy to reduce chance of stroke Optimised prescription requires an individual and closely monitored drug regime Instead of frequent out-patient appointments, patients attend community pharmacies or nurse-led clinics at GP surgeries – pharmacists and nurses acts as supplementary prescribers Patient home testing being introduced Uses an electronic health record shared with hospital and a decision support tool to guide prescription decisions

System 2: Electronically mediated diabetes care At Airedale Primary Care Trust, Bradford GPs and secondary care settings, including diabetes services at Airedale General Hospital, use shared electronic health record SystmOne electronic health record from Phoenix – off-the-shelf product recommended under Connecting for Health

System 3: Risk communication in cardiovascular disease Laindon Model decision support tool models survival based on cardiovascular disease risk factors (including smoking, blood pressure, BMI, age…) Used in a GP consultation to aid risk communication and shared decision-making Distributed to all GP practices in Thurrock PCT

Methods Mixed methods, inductive approach Main data collection consists of ethnographic observational work in the service contexts, supplemented by interviews Based around the patient journey Combined with mini-studies focusing on particular issues Consider both the patient experience and the healthcare professional experience

Workshop: chair’s duties Introduce some new work Ask questions Challenge assumptions

Patient education and Internet use in diabetes Part of WINDFAL programme to support diabetes care at Whittington Hospital Building locally-relevant online resources for patients, including information, communication with healthcare professionals and peer support Educational sessions for patients include sessions on how to use the Internet well and safely

Questions What do healthcare professionals want? What do patients want?  Everyone wants reliable, high-quality, reputable online resources, but what does that mean? Is e-health more of the same or is it transformational?  Does e-health support a general move towards greater patient involvement in their own healthcare, or does e-health drive that process, allowing entirely novel forms of patient involvement in their own healthcare?

Challenging assumptions All facts are the same  Medical facts vs. practical tips vs. experiences Empowerment  We’re playing catch-up for many people: e.g. 10,000,000s of people have joined online support groups (Pew Research Center, 2005) Good information is all you need  Poor meta-knowledge/meta-cognition means good information gets wrongly interpreted

Workshop tasks What do patients want to know? What impacts on a patient’s understanding of and response to information? What are a patient’s belief systems? How does the wider social and public context impact on these beliefs? How does all of the above impact on negotiating the management plan? Think of a time when you or a relative was ill What sort of things were you thinking (or worrying) about? What did you expect from the healthcare professionals you encountered? What did they say or do that helped? Did they say or do anything that didn’t help?