Highlights: Patient initiatives and implant card project

The NJR investigated ways of providing patients with online access to their data

An increasing number of patients are requesting their operation and personal information from the NJR, often following media coverage. There is also a growing awareness of the patient benefits of being fully informed about the implants received, seen in current draft EU legislation. In light of this, the Steering Committee approved an implant card pilot project to investigate ways of providing patient with secure, online access to their NJR record.

Drawing on the views of the NJR Patient Network and the experience of the NJRSC patient representatives, a patient letter, leaflet, card and a pilot website were designed.  The purpose of the implant card is to facilitate access to an online service as the operation and implant information requested by patients is detailed and not transferable to an individual plastic credit card-sized card. 

For the pilot, 5,000 patients have been sent a card with their name and a unique identification number printed on it.  Using the details on the card, patients are requested to register on a dedicated website and share feedback. This website, using example patient data, shows a typical record of a joint replacement operation and the implants used as well as access to a library of related information, including MHRA Device Alerts. 

The results of the pilot will be presented to the NJR Steering Committee in 2014.

The NJR shared data through its Public and Patient Guide and supported patient blogs

Each year, the NJR produces a Public and Patient Guide to its Annual Report. In Autumn 2013, the NJR published both an Executive Summary and full Public and Patient Guide [link] as part of its commitment to finding the best way possible of sharing NJR information with patients, their family, friends and carers.

The registry also works closely with its Patient Network to ensure that patient views help make the decisions about how to present the information in the most useful way. In 2013/14, its membership grew by 50%.

Sharing patient stories

Significant progress was made through the launch of the NJR Hippy Chick blog (www.njrhippychickblog.wordpress.com) sharing NJR Steering Committee member Sue Musson’s experience of hip replacement.  This record of pre- and post-operative experiences has been read more than 8,000 times world-wide.

Another NJR colleague also blogged as he underwent total knee surgery and his story can be found at www.kneedyman.wordpress.com.

The aim of these blogs is to show how NJR information can support a patient’s understanding of joint replacement surgery. 

Keeping the patient perspective on the agenda

Three regional hospital events were held as part of the NJR’s 10th anniversary celebrations. These learning events are one way of sharing best practice in NJR processes and also to say thank you to hospital colleagues who support the collection and entry of data in to the NJR.

NJR Steering Committee patient representatives Mary Cowern and Sue Musson presented the patient perspective at all of these events. Our thanks to Mary and Sue for their continued support and helping to show how patients value NJR data and why collecting patient consent is incredibly valuable to the effective work of the NJR.