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Second National Annual Caldicott Guardians Conference: New and Updates

News and updates from today's Second National Annual Caldicott Guardians Conference chaired by Christopher Fincken, Chair, UK Caldicott Guardian Council.

News and updates from today's Second National Annual Caldicott Guardians Conference chaired by Christopher Fincken, Chair, UK Caldicott Guardian Council. The conference aimed to bring current and aspiring Caldicott Guardians together to understand current issues and the national context, and to debate and discuss key issues and areas they are facing in practice.  

Suzanne Lea Programme Manager Information Governance Alliance (IGA) opened the day with an update from the Information Governance Alliance and discussing the the role of IGA and plans for 2016-17 and how the IGA can support Caldicott Guardians.

Suzanne Lea Programme Manager Information Governance Alliance (IGA) Full Presentation Click Here

Suzanne Lea Biography:

The IGA is a collaborative partnership between DH, NHS England, Public Health England and the HSCIC. It aims to provide a single authoritative source of advice and guidance on IG matters and has worked intensively to develop, with local support, a wide range of support materials for integrated care.  Suzanne has been involved with the IGA since its inception and is currently Head of IGA Communications and Stakeholder Engagement.  Before that she was on secondment to the Department of Health, working on information policy including the Information Strategy “The Power of Information” and in support of Dame Fiona Caldicott’s 2013 independent review of information use in health and care “To Share or Not to Share”.  She has worked for HSCIC and its predecessor organisation, Connecting for Health, for over 10 years.

Dame Fiona Caldicott National Data Guardian continued the morning presentation with a presentation on ‘Developing the role of the National Data Guardian’ and looking in-depth at:

  • review of data security, consent and opt-outs
  • developing the role of the National Data Guardian
  • next steps to safe data sharing in the interests of patients and service users - the part Caldicott Guardians can play


Dame Fiona discussed the development of technology to support health and social care and implications of this for Caldicott Guardians including the review of data security, consent and opt-outs. Dame Fiona stated that the Secretary of State wants a paperless NHS by 2020 - I have it on good authority that this is unlikely to be achieved.

The National Data Guardian was asked to propose:
- a set of data security standards applicable across the health and social are system to assess compliance with CQC

- a new model of consent/opt out

More information here 

This work began at the beginning of September and between September and January proposals developed iteratively with input from a wide range of stakeholders. Dame Fiona said she was very keen that this approach was based on evidence. In the end we had a consistent view. 

Data security elements of the review - what we heard: 

•Examples of good practice and most organisations are concerned about data security…but still issues with people, processes and technology.
•Caldicott Guardians have had a positive impact where they have been properly supported
•Need for simple, consistent standards which are relevant and feasible for range of organisations
•Little appetite for new, burdensome processes – can we work with what we have?
•Compliance must be assured – in a way that minimises burden
•Leaders must show responsibility and accountability – key role for Caldicott Guardians - this is absolutely crucial 

Dame Fiona said that the relationship between the Caldicott Guardian, SIRO and the board is essential. This is about the care of people and should be part of clinical governance. 

Consent/Opt-Out - we heard:

•Low levels of understanding among public about data use and sharing
•Most trust NHS to do the right thing – but want to know about the purpose and benefits of data sharing
•Considerable public support for use of anonymised data
•Review heard both that data are essential for excellent care and citizen desire for choice
•Clinicians, patients, technological experts - all emphasise importance of simplicity
In terms of the consent model Dame Fiona said she knew from the beginning this would be more of a challenge. There is limited knowledge in the general public about data use and sharing. Many assume health professionals share much more than they actually do. Between the privacy lobby and the average member of the public there is a huge difference about what is know about the use of data and the benefits of sharing it. Most public trust the NHS. But the public do want to know what is happening to their information - and if its being shared what is the purpose and what are the benefits.  There is support for anonymised data. We did hear that the public does understand that information is essential for good care, but they need the ability to choose what is shared and with whom. 
Any model we come up with has to be simple. 
Dame Fiona stated that "We now know that the report of the review will not be published until after the European Referendum." The issue about the referendum has been taken at the top of government that anything put into the public domain which might distract us from the "in or out" arguments should be avoided. This was dissapointing. We are having to explain this is not a bad thing-  we have to have an ongoing dialogue with the public about this issue, further testing of our model and ongoing 2 way engagement and consultation. 

Next Steps
•Publication of the Review
•Public consultation and further testing of the model
•Engagement should be ongoing and two-way – a conversation
•Everyone across health and social care has responsibility for making sure the conversation happens
•Implementation will take time and require support from central bodies
Dame Fiona concluded by saying that there is a reponsibilty on everyone to help to ensure proper conversations take place and are engaged in on the new model. "Caldicott Guardians ideally placed to foster conversation about data use and vital to ensure data security standards are embedded". 

Dame Fiona Caldicott National Data Guardian Full Presentation Click Here

Dame Fiona Caldicott Biography:

Dame Fiona Caldicott is the Chair of the Oxford University Hospitals NHS Trust and was appointed Chair of the National Information Governance Board in June 2011 until March 2013. From 2012 to 2013 she led an independent review of information governance for the Secretary of State for Health which reported in March 2013. Its recommendations having been accepted, she has since chaired the Independent Information Governance Oversight Panel, and in November 2014 was appointed the first National Data Guardian for Health and Social Care.

From 1996-7 she chaired the Caldicott Committee on patient identifiable data for the National Health Service Executive, which led to the creation and appointment of ‘Caldicott Guardians’ in all provider organisations in the NHS.

Dame Fiona worked as a Consultant and Senior Clinical Lecturer in Psychotherapy for the South Birmingham Mental Health NHS Trust.  She was also Unit General Manager, a Clinical Director and the Medical Director in that Trust.

As President of the Royal College of Psychiatrists (1993-1996) she was also Chair of the Academy of Medical Royal Colleges (1995-1996).

Dame Fiona was Principal of Somerville College in the University of Oxford from 1996-2010 and served as a Pro-Vice Chancellor with responsibility for Personnel and Equality in the University for a number of years.

Dame Fiona is on the Council of Warwick University and of the United Nations University.

Stacey Egerton Lead Policy Officer, Public Services Team, Strategic Liaison The Information Commissioners Office concluded the morning sessions with an update from the Information Commissioners Office. Stacey Egerton provided an insight in to:

  • learning from case studies of breaches by NHS and Social Care organisations
  • reporting, managing and investigating information governance serious untoward incidents
  • fair processing notices and privacy impact assessments
  • DPA changes in line with Europe
  • the role of the Information Commissioner and an update on the data sharing code of practice

Stacey Egerton Lead Policy Officer, Public Services Team, Strategic Liaison The Information Commissioners Office Full Presentation Click Here

Stacey Egerton Biography:

Stacey joined the Information Commissioners Office in 2012 as a case officer dealing with concerns raised by the public across the local government sector. She is currently a Lead Policy Officer within the ICO’s Strategic Liaison department working with a range of organisations in the health, education and local authority sectors. She has responsibility for helping manage the strategic relationships with the stakeholders in these sectors in order to uphold information rights and promote data privacy for individuals. Over the last 12 months Stacey has done a significant amount of work in relation to data sharing and integrated care initiatives.

Following the morning coffee break Christopher Fincken Chair UK Caldicott Guardian Council delivered an extended interactive session providing Caldicott Update’s and Decision Making Case Examples. In his presentation Christopher Fincken discussed:

  • developing your skills as an effective Caldicott Guardian
  • ethical and legal issues that have come to the Caldicott Guardian
  • caldicott decision making and issues in practice
  • case examples and interactive discussion
  • learning from analysis incidents and queries

Christopher Fincken Biography:

Christopher Fincken is Chairman of the UK Caldicott Guardian Council (UKCGC), and was a Caldicott Guardian for over ten years in an Acute NHS Hospital Trust serving a cathedral city and large rural population before volunteering as a Caldicott Guardian for Marie Curie, the leading UK charity which provides home nursing care and hospice care for people with a terminal illness.

He was also an independent member of the National Information Governance Committee of the Care Quality Commission (NIGC - CQC) until it’s dissolution in 2015. He also represents the UKCGC on the Information Governance Forum

He represented UKCGC on the NHS Protect Strategy Implementation Group and was a member of the NHS Commissioning Board’s IG Professional Leadership Group. He was also Chair of the Honest Broker PIA Steering Group and a member of the cross government data sharing workshop addressing barriers to information sharing in relation to gang violence. He has a particular interest in Multi Agency Risk Assessment Conferences on Domestic Violence (MARAC’s) and Multi Agency Public Protection Arrangements (MAPPA) and is the author of “Striking the Balance”, guidance for information sharing in relation to Domestic Violence published by the Department of Health. 

He combines a deep knowledge of the challenges that real life presents with a passion to understand and unravel problems to try and find the best solution. He writes, lectures, and provides innovative, memorable and challenging training all based on practical experience! In addition he provides advice and guidance to an extensive range of organisations both local and national on Caldicott Guardian, confidentiality, information sharing, information governance and data protection.

Following lunch the conference focused on 20 minute sessions providing short updates on current hot topics and issues that Caldicott Guardians are facing in practice. With presentations on:

  • Mandatory reporting duty for female genital mutilation (FGM)
  • The use of mobile devices in hospitals (phones, tablets, cameras) and managing concerns regarding social media
  • Developing the New GMC guidance on confidentiality
  • The Summary Care Record

The day concluded with presentation on Working with the Police and learning from effective multi-agency information sharing in safeguarding and Legal update for Caldicott Guardians: Decision Making, the duty of candour, confidentiality and consent.

Future events of interest:

Caldicott Guardian Training Course - Held throughout 2016

Caldicott Guardian Training Course for Beginners - Held through 2016

National MARAC Summit: Improving the effectiveness of Multiagency Risk Assessment Conferences (MARAC)
Tuesday 7 June 2016
Hallam Conference Centre, London

Implementing the NICE Quality Standard for Domestic Violence & Improving the effectiveness of MARACs
Tuesday 20 September 2016
Hallam Conference Centre, London

3 May 2016


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