1. 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

2. Iain Hutchison

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

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

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

6. 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 1st presentation
MDT co-ordinator filling in all fields – time & accuracy & duplication of effort

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

8. 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

9. 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

10. 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

11. 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

12. 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

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

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

15. Dendrite Flexibility Retrieval Consent Apps International
Multiple datasets
NCRS
HSCIC

16. 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

17. 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)

18. 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

19. 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

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

21. 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

22. 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

23. 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

24. Iain Hutchison