National Obesity Database

Patient Reported Data:

This project will be overseen by the Society of Endocrinology to develop a cohort designed project to collect data via a patient configured application from Tier 3 services. 

The Society of Endocrinology will be responsible for

1. Overseeing the grant. This will involve contracting with the company who are making the database as well as overseeing the governance of the database.
2. Setting up a committee that would be responsible for overseeing access to the database data and signing off on the annual report. The study management committee will report to this committee. This committee will also help to determine the fields for the database. They will also sanction what studies can be linked to the database.
3. Governance of the database such as ensuring that all NHS requirements are meet by the database.
4. Supporting other NHS sites with getting set up on the portal and consenting patients onto the app.
5. Obtaining ethics for any projects linked to the database and support to other NHS sites for set up for these studies.
6. Dealing with day to day queries from NHS sites and liaising with the Database company as required.
7. Running reports and producing the yearly reports.

The build of the patient real world evidence database

The Steering committee, made-up of bariatric physicians, dietitians, bariatric nurses and psychologists will decide on the specification of the database and what data will be captured.

Development of a patient centric data collection app to assess the patient reported outcomes and ongoing treatment for these to improve patient care and have a better understanding about the Tier 3 service provided.

There is an app developed with PeopleWith so that patients can securely log in and enter patient pertinent to them and their condition. This will have specific questionnaires and questions which relate to obesity alongside general health questions.

This will help Tier 3 services to address waiting lists and clinic timings, but also have a better understanding of the treatments in the market and coming to the market.

Clinical Data: The clinical database will be built in two phases. Phase 1 will make the online platform for hospital  healthcare workers to enter data and also allow pulling of data from other sources. Phase 2 will allow linkage of data from the National Bariatric Surgery database and also enable patients to see their own data and complete questionnaires sent to them.

The database will be built by Hicom, a specialist healthcare software development company with over 30 years’ experience in the design and deployment of patient care and electronic medical record solutions. The database will be online, with secure log in, on a secure server owned by Hicom. Hicom own and manage their own data centre in the UK with 24-hour security and off-site disaster recovery provision. They are also a Microsoft Certified (Silver) Partner, have Investors in People accreditation and are certified under the ISO-9001 quality assurance and ISO-27001 information security standards. The online database will have national coverage with the ability to be accessed on a European and/or global level, if necessary.

There are 8 steps to completion of the database, and these are as follows:

Step 1 – Development of the specifics of the Database - This has been completed.

Step 2 – Phase 1 building of the database

Step 3 – Piloting phase 1 of the database

Step 4 – Roll out of the phase 1 database to Tier 3 services

Step 5 – Phase 2 build of the database

Step 6 – Piloting phase 2 of the database

Step 7 – Roll out of phase 2 of the database to Tier 3 services

Step 8 – Working with commissionaires and the Department of Health (DOH)

Step 9 – Working to link research projects into the database.

National Obesity Steering Group 
Professor John Wass (Chair)
Professor Rob Andrews
Dr Adrian Park
Dr Karen Coulman
Sarah LeBroq – patient liaison
Danielle Wigg
Dr Ian McKenna
Dr Amanda Peacock
Dr Sadaf Ali
Dr Grigorios Panayiotou
Dr Petra Hanson
Irena Cruickshank
Dr Ahmed Al-Marbeh
Dr Imad Mekhail
Dr Luke Boyle

All Tier 3 Obesity Services are encouraged to be involved in the project

The overarching aim of this project is to develop a National Obesity patient reported register that will collect data from Tier 3 services and patients.

Clinically Collected Data

The specific objectives of this data collection included in the ethics will be regarding the type of treatment that is seen across Tier 3 services

Patient Reported Data

The specific objectives that are included in the ethics application will be

1. Demographics and treatment portfolios of patients attending Tier 3 services
2. Do those attending Tier 3 services experience bias

The timeline for scheduling the project:

3. To build the patient configured app that will collect patient reported data
4. To build a clinical portal to verify the data held in the patient app
5. To use the patient reported data, clinically validated data to create a holistic view of patients seen in Tier 3 services
6. To answer the outcomes set out by the steering committee to address bias in the services and health inequalities of patients in Tier 3 services.

The collection of national data will ultimately help us to improve services. We expect to be able to determine:

1. Which areas are not offering a Tier 3 service and help to ensure that these are set up.
2. Who works in Tier 3 services and what services they offer to overweight and obese patients. Those not currently conforming to specification will be offered support.
3. Whether there is equal access to treatment based on sex, age, social class and ethnicity. If not, this will be addressed.
4. The characteristics of the people attending the 3 services. This data will give an insight as to how unwell this population is and how many people are being referred into these services. This will in turn inform service planning.
5. How effective these services are and whether this varies from area to area. Centres with proven effective services can offer guidance and support to those not as effective.
6. Some insight into the “real world” effectiveness of different types of interventions.
   The local data that each centre receives will also be helpful in planning their services and enable them to look at how adaptions to their service affect their outcomes. This will enable them to improve the effectiveness of their service.

Finally, we expect that by building this database we will stimulate research in this population. The data from the database will be available on request for research. Researchers will be able to apply to use the database to identify patients for research, which should help to increase the number of people with obesity involved in studies. Results from these studies in the longer term will improve our understanding and treatment of obesity.

October 2024-October 2026

Data is made available to researchers, patient support groups, pharmaceutical or medical device companies, and other health care professionals via the data access request form in line with the data access policy of the Society for Endocrinology.

You can find more information about governance here. 

The database will be built in two phases. Phase 1 will make the online platform for hospital  healthcare workers to enter data and also allow pulling of data from other sources. Phase 2 will allow linkage of data from the National Bariatric Surgery database and also enable patients to see their own data and complete questionnaires sent to them.

The database will be built by Hicom, a specialist healthcare software development company with over 30 years’ experience in the design and deployment of patient care and electronic medical record solutions. The database will be online, with secure log in, on a secure server owned by Hicom. Hicom own and manage their own data centre in the UK with 24-hour security and off-site disaster recovery provision. They are also a Microsoft Certified (Silver) Partner, have Investors in People accreditation and are certified under the ISO-9001 quality assurance and ISO-27001 information security standards. The online database will have national coverage with the ability to be accessed on a European and/or global level, if necessary.

There are 8 steps to completion of the database, and these are as follows:

Step 1 – Development of the specifics of the Database - This has been completed.

Step 2 – Phase 1 building of the database

Step 3 – Piloting phase 1 of the database

Step 4 – Roll out of the phase 1 database to Tier 3 services

Step 5 – Phase 2 build of the database

Step 6 – Piloting phase 2 of the database

Step 7 – Roll out of phase 2 of the database to Tier 3 services

Step 8 – Working with commissionaires and the Department of Health (DOH)

Step 9 – Working to link research projects into the database.

• Novo Nordisk has provided funding towards this project via a sponsorship. The project has been developed independently of Novo Nordisk
• Rhythm Pharmaceuticals has provided funding towards this project via a sponsorship. The project has been developed independently of Rhythm Pharmaceuticals
• Boehringer Ingelheim has provided funding towards this project via a sponsorship. The project has been developed independently of BI

NA