23 November 2022

Over 50 charities and professional health bodies are calling for a revamp of the way patient data is collected across England to improve rehabilitation services, which enable people to manage their medical conditions and live more independent lives.

The Community Rehabilitation Alliance (CRA) believes that centralising patient data collection is key to tackling health inequalities and will revolutionise under-resourced, over-subscribed acute, specialised and community rehabilitation services.

In 2021, the CRA set out to explore the challenges and opportunities around data use for community rehabilitation (rehab) to support service improvement and commissioning by surveying services.

Key findings include:

  • Of 206 community rehabilitation organisation survey respondents, 83 (40%) are not submitting data to databases;
  • 45% of survey respondents reported duplicating data entry when submitting details to databases;
  • Less than half (45%) of organisations who submit data to databases always receive data analysis – limiting its usefulness;
  • Data is not collected consistently and is not stored in one central place – making it challenging for services to access wider data and use it to benchmark and improve their services;
  • There is broad agreement about what an ideal core dataset for community rehab would look like;
  • Community rehabilitation organisations want service level data for multiple purposes including clinical delivery, research, quality improvement, benchmarking, showcasing best practice, making business cases and workforce planning.

A key recommendation that the CRA makes in its report Making Community Rehabilitation Count is for NHS England NHS Digital to use a single, centrally located database for community rehab services to use. It should be safe, efficient and co-designed with stakeholders to reduce data entry duplication and foster data sharing, which will help with levelling-up health inequalities across the country. For too long rehabilitation has been the Cinderella service of healthcare but having the right data will help service providers and healthcare workers realise it’s true potential and value for patients.

Prof Karen Middleton, chief executive of the Chartered Society of Physiotherapy, says: “What is counted is what often counts – that’s why we’re proud to have funded this work, as part of the Community Rehabilitation Alliance – to show the importance of data in designing services that meet population needs. The Chartered Society of Physiotherapy is deeply committed to leading the rehabilitation movement and will continue to work collaboratively with over 50 patient organisations and professional bodies to ensure rehabilitation is a key pillar of health.”

Kamini Gadhok MBE, chief executive of the Royal College of Speech and Language Therapists adds: “Speech and language therapy is absolutely vital for people with communication, eating, drinking and swallowing difficulties, but like so many critical rehabilitation services, without consistent data collection, it makes it challenging for our members to plan workforce requirements and tackle health inequalities. Our members need this intelligence to provide the best possible support for their patients and deliver value for money for the taxpayer.”

The Community Rehab Alliance comprises:

  • Adult Cerebral Palsy Hub
  • Age UK
  • Alzheimer’s Society
  • Arthritis and Musculoskeletal Alliance
  • Asthma and Lung UK
  • British and Irish Orthoptic Society
  • British Association for Cardiovascular Prevention and Rehabilitation
  • British Association of Social Workers
  • British Geriatrics Society
  • British Society of Physical and Rehabilitation Medicine
  • Chiltern Music Therapy
  • College of Paramedics
  • Community Therapists Network
  • Headway
  • ICU Steps
  • Independent Neurorehabilitation Providers Alliance
  • Later Life Training
  • Leonard Cheshire
  • Limbless Association
  • Macmillan Cancer Support
  • Meningitis Research Foundation
  • MS Society
  • Muscular Dystrophy UK
  • Nuffield Health
  • Parkinson’s UK
  • Person-Centred Neurosciences Society
  • Rehabilitation Workers Professional Network
  • Royal College of Occupational Therapists
  • Royal College of Podiatry
  • Royal College of Speech and Language Therapists
  • Royal Osteoporosis Society
  • Same You
  • Society of Sports Therapists
  • Spinal Injuries Association
  • Stroke Association
  • Sue Ryder
  • The British and Irish Association of Stroke Physicians
  • The British Association of Sport Rehabilitators
  • The British Dietetic Association
  • The British Psychological Society
  • The Chartered Society of Physiotherapy
  • The Disabilities Trust
  • The National Care Forum
  • The Neurological Alliance
  • The Queen’s Nursing Institute
  • The Society for Research in Rehabilitation
  • The United Kingdom Brain Injury Forum
  • Thomas Pocklington Trust
  • UK Active
  • UK Kidney Association
  • Versus Arthritis