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HEALTH RECORDS, CITIZENS & GENES - Patients' views & practices

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Bradbury House

10 Market Street

Glossop

SK13 8AR

United Kingdom

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“HEALTH RECORDS, CITIZENS AND GENES”

Patients’ views and practices on the processing of their Health Data

Bradbury House Market St, Glossop SK13 8AR 12th July 2019 - 09.30 to 15.00

This free event has been primarily organised for patients registered with GPs in the West Pennine Local Medical Committee area and for the staff that care for them in order to:

  1. Improve public understanding of the benefits and potential opportunities arising from accessing and sharing their health and care records and information

  2. See how patients and practices can overcome any potential risks associated with sharing their health and care data

The event brings together national and local health care experts, leaders and patients in a friendly and informal environment to learn, share, debate, support and encourage one another in making best use of our health data.

The event is aimed at Patients, GPs, Data Protection Officers and any Health and Care professionals who are keen to try and improve the use of Health and Care data across Greater Manchester and within their own communities.

09.00 – 09.30 Registration and coffee

09.30 - 09.40 Introduction Jenny Spiers – Greater Manchester Head of Information Governance – Interoperability, Dr Richard Fitton Data Protection Officer for West Pennine LMC and/or Dr Amir Hannan Chair West Pennine LMC

09.40 – 10.40 What are the reasons for the NHS processing personal health data?

Chair - Ingrid Brindle – Royal College of General Practitioners lay member Committee for Medical Ethics, Chair of Haughton Thornley Medical centres PPG and Hyde Neighbourhood PPG, Patient experience group member Health Innovation Manchester

09.40 - 10.00 “A website to explain the reasons for a national health data base to the public” – Philippa Shelton – Policy Communications Manager, Understanding Patient Data, Greater London

10.00 - 10.20 “Explaining the role of patient data within research into the effects of the human genome on disease” - Mark Effingham Chief Operating Officer – UK Biobank

10.20 - 10.40 “The existing evidence of the impact of patient accessed records” – Dr Claudia Pagliari Senior Lecturer in Primary Care and Informatics / Programme Co-Director (MSc Global eHealth) Edinburgh Global Health Academy

10.40 – 11.00 Coffee

11.00 - 11.20 Interlude 1 “The Planet & DNA” – Bruce Elliott – Senior OD & Learning Manager NHS Digital and patient and Richard Fitton

11.20 – 12.30 How are Patients using their health data to improve their own health and care?

Chair - Yvonne Bennett – Patient advocate and member of Haughton-Thornley Medical Practice PPG

11.20 - 11.30 Patient journey – Living with ulcerative colitis – Oliver Crowton

11.30 - 11.40 Patient journey – Managing my family’s records – Yvonne Bennett

11.40 - 11.50 Patient journey – Improving my Type1 diabetes control – Bruce Elliott

11.50 - 12.00 Patient journey – Managing my daughter’s life around her abilities and many health care professionals – Edna Davies

12.00 - 12.10 Patient journey – Supporting the control of complex gynaecological problems Cheryl Ashton

12.10 – 12.30 Patient Participation Groups – how they can improve patient participation and activation – Ingrid Brindle, Chair Thornley House PPG

12.30 - 13.00 Interlude 2 “Out of the Ice Age” Toto Gronlund and Richard Fitton

13.00 – 13.30 Lunch

13.30 – 15.00 How are Health and Care Professionals trying to use patient data to improve health?

Chair - Bruce Elliott NHS Digital and Patient

13.30 - 13.50 “Information Governance and its challenges and opportunities across England and Greater Manchester” – Jenny Spiers – Greater Manchester Head of Information Governance – Interoperability

13.50 - 14.10 “Data Protection challenges and opportunities within hospital settings” – Dan Greenwood Data Protection Officer for Tameside and Glossop Integrated Care Foundation Trust

14.10 – 14.30 “Your health records are for more than just your life - Donating records and data processing powers with Lasting Powers of attorney” John Galvin, Solicitor, John Sleigh and Co

14.30 - 15.00 Panel discussion– “The Greater Manchester Record – dream or reality?”

Chair – Toto Gronlund Adviser National Institute of Health Research and Former NHS Head of Patient and Public Involvement

15.00 Close

Please book via Eventbrite or by contacting Bruce Elliott at: bruceelliott@nhs.net

For further information please contact Richard Fitton at: richard.fitton@nhs.net

If you feel a little unfamiliar with some of the terms we've used above please don't worry as the focus on the day is all about making certain we're all informed and engaged in understanding and making best use of our health data.

If you're keen to know more in advance we've included a few internet links below:

West Pennine Local Medical Committee: https://www.westpenninelmc.org.uk/

Understanding Patient Data: https://understandingpatientdata.org.uk/news/next-steps

UK Biobank: http://www.ukbiobank.ac.uk/

Haughton Thornley Patient Participation Group: http://www.htmc.co.uk/pages/pv.asp?p=htmc4

The value of Patient Participation Groups and record access for Diabetics: https://blogs.diabetes.org.uk/?p=5726


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Date and Time

Location

Bradbury House

10 Market Street

Glossop

SK13 8AR

United Kingdom

View Map

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