HANA A Head Neck dataset for 2016

HANA A Head & Neck dataset for 2016 Professor Iain Hutchison Oral and Maxillofacial Surgeon Barts Health Director, NFORC, The RCS Head and Neck Clinical Trials Unit Saving Faces-The Facial Surgery Research Foundation

Iain Hutchison • 07889 473916 • savingfaces@mail. com

Public Health England • National Cancer Intelligence Network • NCRS – National Cancer registry service; Grew out of cancer Registries (i) COSD - Cancer Outcomes Service Dataset (ii)SACT - Chemotherapy Dataset (iii) RTDS – Radiotherapy Dataset (iv) With RCS run the Prostate Audit (v) With RCP run the Lung Audit

NHS England 1. The Health Quality Improvement Partnership (HQIP) – select & fund National Audits 2. The Health and Social Care Information Centre (HSCIC) – Leeds - Technology and National Data Storage – National Audits: (i) Hospital Episode statistics (HES) (ii) Office of National Statistics (ONS) (iii) With RCS run Oesophago-gastric Audit (iv) With RCS run Bowel Audit (v) DAHNO

Change – Ugh!!! • Why are we not continuing with DAHNO? • We’re used to it and it works • Why are we Here: (i)BAHNO wanted more clinically relevant audit (ii)HQIP put out a tender – BAHNO, Saving Faces, NFORC & Dendrite consortium succeeded

DAHNO – 10 Years • Grown more successful and valuable with time • All Hospitals committed BUT • Not all specialty groups committed • Grown away from BAHNO • Process Driven –e. g. Radiology Fields • Built around 1 st presentation • MDT co-ordinator filling in all fields – time & accuracy & duplication of effort

DAHNO – 10 Years • No focus on details of recurrent or 2 nd primaries • No focus on outcomes • Focused on Surgery –Only 3 RTX and Chemo fields • Information Governance problems with Linkage of datasets – 10 th DAHNO report • Clinicians & AHPs don’t see their data unless signed in and check • No Publications in 10 years

Methodology of Dataset Collection & Delivery • MDT coordinator – meeting and rest of week “translating” letters and hospital records • DAHNO - MDT coordinator to Cancer Data Manager to HSCIC annually • COSD – MDT coordinator to Cancer Data Manager to NCRS monthly • RTDS – automatic upload from Machines to Clatterbridge - now NCRS • SACT – monthly upload from Hospital Pharmacists to Oxford

NCRS NCIN A burden shared… • Decide who is the best person to record the different data items • Don’t leave it all to one person • See who records the data items at the point of care • Establish feasibility of using information reported by patients • Looking later in pathway • Interventions • Recurrence • Long-term survival 9

How do we know it’s right? • Clinicians are responsible for ensuring accurate data is recorded • Make sure that you know how and when your data is submitted • Agree a (manageable) system for checking accuracy • OR BETTER STILL SUBMIT IT YOURSELF – THEN YOU KNOW IT’S CORRECT 10

HANA • Working with Somerset , NCRS, NCIN, Infoflex etc. • Primacy of MDT • BAHNO at its Heart • All Specialty Groups on Steering Committee • Specialty Groups decide on Fields • Clinically relevant (not process driven) • Worthwhile data • COSD, DAHNO, and new fields RTX, Chemo, Outcomes

HANA • Clinician friendly data entry systems • Ease of data retrieval by data enterers for personal research and corrections • Apps & real-time data entry e. g theatres & elogbook • “Give back” to data enterers – text docs from data entered e. g discharge summaries, clinic letters • Actual Consent on Computer / Tablet / phone with CNS

HANA – Take up • Oncologists • Speech and language therapists • Dietitians • Surgeons • Dentists • CNS • Path • Radiologists

HANA • Annual call for Research • Research RAB • Europe • Aim for 3 publications per year

Dendrite • Flexibility • Retrieval • Consent • Apps • International • Multiple datasets • NCRS • HSCIC

Data Transfer Clinician to MDT co-ordinator • Surgeon in theatre • Clinician at each Clinic • CNS at clinic • SLT • Dietitian • Oncologist at planning & appts • Radiologist & Pathologist • MDT co-ord to cancer manager upload COSD & HANA once monthly

Advantages & Disadvantages • No change BUT • Hospital systems may not allow • May not be able to retrieve data in real time • May not have pt data online at each clinic appt • May not get discharge summaries, clinic letters in time (once a month)

Data Transfer Clinician to Dendrite • Direct upload on web portal in real time • Secure upload from hospital computer, ipad or phone (with or without App) • Following day during working hours MDT co-ordinator can download your data as a CSV file and transcribe more accuratelyinto patient record on Somerset, Infoflex etc because it’s the exact data you entered

Advantages & Disadvantages • Upload 24/7 • Retrieve 24/7 BUT • Your Hospital may not like it • Not possible to enter into Dendrite until pt registered i. e demographic data entered by hospital • Clinician must be registered by Dendrite

Clinicians Views 1. Content with 1 st presentation and MDT systems 2. Discontent with data retrieval and reporting 3. Discontent with lack of good clinical data: - RTX & Chemo data - Follow up - Recording of hospital performance - Little outcome data

Database Status • Database complete by end of March 2016 • Pilot in April at 5 hospitals • Release May 2016 • A few mandatory fields, mostly desirable fields, a few optional fields 60% DAHNO; 20% COSD; 20% HANA • Presented in sections: demographics; each specialty group section; follow up fields etc • Flexibility of data entry e. g Somerset enable surgeon to do direct; deliver text doc; or hospital system enable tick box op entry then collected by MDT coordinator; or direct access to Dendrite and next day retrieval by MDT coordinator

Forward Look • Once database agreed & Locked can accept all 2014/2016 DAHNO data collected so far • 6 Clinical Researchers at Saving Faces will be allocated and each contact 10 MDTs & Hospitals to develop relationship for to and for discussions and answering queries • COP 2013/4 – we will send MDT Leads & coordinators list of total operations to verify and adjust in next 2 weeks • No release of HES and ONS from HSCIC so no 30 -day mortality data this year • COP 2014/5 – we will start on this as soon as received

Fundamental Changes • More Radiotherapy and Chemotherapy Fields • Simple Follow-up fields • Monthly upload • More self-sufficient database • Opportunity for Registered clinicians to enter their data 24/7 • Opportunity for Registered clinicians to retrieve their data 24/7 & receive text docs to help populate clinic letters, discharge summaries • Encourage more engagement with clinical groups in real time • Opportunity to access data for research

Iain Hutchison • 07889 473916 • savingfaces@mail. com