Crowdsourcing data to design a better future for amputees

The American Congress of Rehabilitation Medicine (ACRM) 2020 annual conference featured several limb loss or amputation-focused presentations. Many of these highlighted a new approach that is developing in the US, where the sector as a whole collaborates on accessible platforms with the aim of sharing information and resources so as to improve treatment and quality of life for amputees.

The National Limb Loss and Preservation Registry (NLLPR) is a project funded by the US National Institute of Health and the US Department of Defense. The aim of the project is to develop a database of information and resources to support research, policy and practice in the field of limb loss rehabilitation. The data is intended to be used by all stakeholder groups including:

  • By physicians, wound care and rehabilitation specialists, therapists and prosthetists during clinical care.
  • By engineers and industrial scientists for prosthetic device design.
  • By health economists, policy-makers and insurers for rehabilitation and prosthetic funding decisions.

The data, information and resources will be gathered and stored on one easily accessible platform. It will then be analysed and presented in reports, metrics and analytics. An external collaborative panel has been established to oversee the Registry, consisting of influential voices from all sections of the of the amputee community including clinicians, prosthetists, amputees, insurers, prosthetic manufacturers and patient groups such as the Amputee Coalition of America.

The project is evidently well-supported and there are positive signs for how this could improve future amputee rehabilitation.

The UK has no equivalent resource, but is highly likely to experience a ripple effect from any US innovations. It is to be hoped, for example, that prosthetic advancements will result from the participation of some of the world’s leading manufacturers, who are heavily involved in the project and even represented on its steering panel.

The increased levels of collaboration between all of the different stakeholders should also facilitate greater transparency generally and lead to clinical improvements. For example, there are currently several different providers and techniques for osseo-integration (direct skeletal fixation) and insufficient clinical evidence regarding long-term effects. If information can be shared regarding the most successful surgical procedures, component designs, therapy programmes etc, then the process could become more consistently successful, with shorter recovery times and fewer revisions.

The NLLPR is an intriguing idea and fits a wider ACRM conference theme of data science fuelling medical progress, where researchers collaborate to create sufficiently large data sets for meaningfully representative analysis and trending, in order to extract best practice and raise clinical standards. The NLLPR project may eventually also allow data-driven prediction of long-term outcomes for different types of limb loss, in key categories such as mobility. It will be interesting to watch how it develops, including its potential for lowering indemnity spend in UK amputation claims by maximising function and independence, and for supporting compensator reserve modelling through predictive analytics.

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