The Futures Forum was set up to advice on the development of the health service so that patients will be at the centre of every decision, and quality will be the organising principle for the NHS published its second phase report last week.
Steve Field and colleagues are leading the review and have been up and down the country meeting thousands of members of the public, patients and service users, carers, health and social care professionals and managers in a variety of settings.
They heard very clearly that people want more control over their health, through better information, better communication, and a louder voice. There is a strong consensus that “it’s the patients data”, not the “systems data”. The huge frustration with the obstacles to capturing and sharing information that gets in the way of delivering high quality, integrated care were made evident time and again. There was a consensus that current information governance procedures do not get the best balance between protecting patient confidentiality and sharing information to ensure high quality care.
There was a plea for the NHS to embrace and use patient generated comments.
Jeremy Taylor and David Haslam wrote the section of the report highlighting the importance of information and they concluded three things. Firstly, the health and social care system must use and communicate information much more effectively- we should regard poor information as poor quality care. Secondly, the barriers to making the “information revolution” a reality are more cultural than technological. Here, the NHS must recognise that: information is an integral part of the therapeutic process; communication matters; records belong to the patient; responsibly sharing data is vital for patient safety and continuity of care; consent matters; professionals must know how well they are doing and how they can improve; and openness and transparency are vital. Finally, all of this is possible and is carried out somewhere, but adoption remains patchy.
The report citied several examples of patient access to their primary care records. The government has recently given a commitment that all patients will have access to their online GP records by the end of this parliament. The Future Forums Report drew particular attention to the fact that kidney patients are given direct online access to their hospital records, through Renal Patient View (RPV) and commended this UK project, for the partnership between patients and clinicians.
RPV is the future; it provides online information about diagnosis, treatment and latest results. Patients can share this information with anyone they want, and it can be viewed from anywhere around the world.
Of course, the concept of patients owning their own records is not a new one. Maternity records have been written for patients and owed by them through the duration of their pregnancy for over 20 years now. Websites such as Patients Know Best already offer clinicians the opportunity to give patients access to their medical record, and every kidney unit in the United Kingdom should be able to offer RPV to people with kidney disease.
A little birdie also, tells me that in the forthcoming national CQUIN scheme, RPV will be one of the quality markers.