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Putting patients in control of their records and information

Dr Amir Hannan General Practitioner Long Term Conditions, Information Management & Technology, and Patient Engagement & Empowerment Lead, Tameside & Glossop CCG with Ingrid Brindle Chair Thornley House Patient Participation Group spoke at today’s Electronic Patient Records conference providing a guide to giving patients a feeling of control of their health records including:

• empowering and activating patients & carers in managing their health
• ensuring information is used for shared decision making at commissioning and care delivery level
• a patient perspective and clinician perspective of the Partnership of Trust
• the value of a practice-based web portal eg.
• lessons learned from giving patients access and understanding to their GP records since 2006
• overview of challenges and myths and how to overcome them
• a demonstration and service user perspectives

Ingrid discussed her experience as a patient who has had online access to her records since 2006. Ingrid believes passionately that patients can only make good health choices if they are provided with relevant, good quality information when they are selecting from the hundreds of health related decisions they make every day. The record gives access to all test results, summary of significant events, letters, referrals etc. There is a mobile phone app so information is available anywhere at home or abroad with just 2 passwords. Ingrid stated that what is needed is for patient information to be joined up. See the health pledge website 

Dr Amir Hannan is a GP at Haughton Thornley Medical Centres in Hyde, UK and a board member for Tameside & Glossop CCG leading on Long Term Conditions, Information management & Technology and Patient Engagement / Empowerment. Developing a “Partnership of Trust” between patient and clinician, the practice has enabled over 4100 citizens (35% of total population) to access their GP electronic health record on-line, helping them to self care and gain a better understanding of their health. The practice-based web portal puts patients, managers and clinicians at the heart of healthcare and helps drive change. 

Amir talked about partnership working with patients, building a trusting relationship, and the importance of listening to patients, working alongside patients and supporting patients to understand and use the system. This is about taking time and journeying with the patient together-they need support to do this. This is not about the IT.

The 6 Ps for success:
•    Patients and the Public
•    Partnership of Trust
•    Paradigm Shift in Healthcare
•    Practice makes Perfect

4167 patients are now signed up to their GP electronic health record at the practice. 42%of asthma patients, 41% for Diabetes, Depression and Anxiety 61%, 38% of cancer patients, 17% of patients with learning disabilities, 35% of Bengali patients are signed up. However when these patients go to hospital they do not get asked if they have access to their records as the culture isnt there at the moment. We need to start to think about what really matters to the patient and how we get to the empowered patient. You need to create an interest and enable, informing them about what they can do today, and activating them. The reality is people forget so you have to remind and reactivate them. Sometimes nothing happens until a crisis happens eg they turn up at the hospital and they didn’t have the records – patients then realise they have access and understanding and become an empowered patient. 

We also need to think about real time safety netting – when people are checking their own tests and records they need to know there is a safety net there. The idea of safety net are incredibly important.

Key principles:
•    The patient is (almost) always right
•    Get stuff done
•    Consent is king
•    Cut corners at your peril
•    Workflow, workflow, workflow
•    Let’s make it fun
•    The devil lies in the detail
•    Don’t stop now

Amir then went on to demonstrate how you sign up to the system with patients.

The full presentation is available for download at the end of this page.

Future events of interest:

Information Governance in Mental Health: Implementing Caldicott2 & the New Code of Practice on Confidential Information
Monday 11 May 
Hallam Conference Centre, London

Cyber Security in Healthcare: Assuring and securing information in the NHS
Tuesday 12 May 2015 
Hallam Conference Centre, London

Electronic Document Management in Healthcare: Delivering a Paperless NHS
Wednesday 1 July 2015 
Manchester Conference Centre, Manchester

Legal Masterclass: Confidentiality, Data Protection and Information Governance
Friday 18 September 
Hallam Conference Centre, London

Electronic Prescribing In Hospitals: Moving Forward
Tuesday 6 October 2015 
Colmore Conference Centre, Birmingham

Download: Dr Amir Hannan & Ingrid Brindle full presentation

29 April 2015


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