Highlights: Patient initiatives

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

In 2014 the NJR undertook an implant card pilot project, the aims of which were to determine patient information needs and the desire for easier access to information about their own implants and operation record. Plus, other related information.

For the pilot, a website was developed with example information, including ‘dummy’ procedures, and approximately 5,000 patients were sent implant cards and information about the pilot.  Patients were asked to register for the pilot project – using a unique number printed on the physical implant card - and encouraged to leave feedback once they had viewed the website.
The actual number of patients who registered was approximately 20% of those who had been sent an implant card.  As return rates in excess of 80% are consistently achieved for PROMS, the response rates for the pilot were disappointingly low.

Those that did register for the pilot and subsequently left feedback, were unanimously in support of such a service and 80% indicated that they had received no information about what devices they had had implanted.  A number of valuable lessons were learned about how the information should be accessed and laid out for a predominantly older age group that may not be comfortable accessing personal information online.

The NJR Steering Committee has decided that the service will not be developed further until such time as there is more understanding as to why 80% did not register to use the pilot site.  Next year it is planned to follow up with those patients who did not register and to contact, by email, approximately 13,000 patients and ask them to complete a survey to determine, from a wider group of patients, if online access to information is something that patients feel is important to them. 

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 September 2015, the NJR published its executive summary and public patient guides 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.

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

The NJR has an ongoing programme of regional hospital events. 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.