The Big Consent Issue
Everybody wants ‘the data’ or is that the GP record? Sharing personal health information is necessary so that those who require information to safely treat can see it. This is a requirement for good quality, safe, effective care. The public expect personal health information to be available where it is needed. There are many local data sharing agreements that simply require patients to give clinicians permission to view without seeing what is being shared. Four Care.Data path-finders around England have just been announced to trial methods of working without any mention of patients’ role in checking the data or viewing it. Now after much talk we are also beginning to hear of practices that are starting to enable patients to view their records because of the NHS England contractual requirement and the pledge that everybody should be able to view their records by April 2015. On the 1st April 2016, there was a contractual requirement also for practices to enable all patients to see their "detailed coded data" too.
But there’s a catch – we need to share the information, ensure we comply with "no decision about me without me” and ensure we minimise the risk of harm to the individual as per the Data Protection Act.
Explicit Consent Process with proven track record
In 2006 Haughton Thornley Medical Centres started to offer patients access to their full electronic health records. This is an explicit consent process that requires the patient to complete an online questionnaire or paper form demonstrating their understanding of the issues. We provide further information for patients and families wishing to know more. www.htmc.co.uk/GetAccessNow. It takes between 1-2 minutes to complete. Once completed, the patient’s record is checked by the practice to ensure it is safe to share. Only then is access to the record switched on, a code added to the record and an email sent to the patient to confirm acceptance. If any issues are identified then the practice contacts the patient to discuss these. The questionnaire was developed with patients and has been fine-tuned to make it easy to administer within a GP setting. Carers or family members can complete it on behalf of the patient if necessary and only where appropriate.
12 years experience of sharing with others how to share records with patients safely
Over 6500 patients (54% of patient population) have completed this process without a single problem. Patients are supported by the practice-based web portal www.htmc.co.uk and often asked to complete the questionnaire whilst in the consulting room either over the phone or in person. A number of local practices are following this procedure which has been shared at many fora including the Royal College of General Practitioners, the Information Commissioners Office, the National Information Governance Board, the General Medical Council, the Medical Protection Society, the BCS Primary Health Care Specialist Group, EMIS / SystmOne National User Groups, the Kings Fund, the Royal Society of Medicine and publicly via twitter. This builds a strong Partnership of Trust between patient and clinician and enables the patient to demonstrate their aptitude to handle personal data and more importantly understand their health needs whilst safeguarding the clinician / practice from any accusation of reckless sharing of the data. Here is the case study which describes how we did what we did written for NHS Improving Quality
Patients can view their record and present it to those who need it
The record is available for the patient to check and share with whom they like, when they like, wherever they may be and for what purpose. They can provide the context and confirm its accuracy. We are now putting systems in place to systematically provide the service for all patients in the practice who want it. This is quality, safe patient-centred care supported by the clinicians and staff in the Information Age. We would encourage all practices to follow our example and introduce similar processes in their practice too.
See 10 stage process for enabling patients to access their records as described in Practice Matters, a publication of the Medical Protection Society
See the online explicit consent process including a short video explaining the process by Dr Hannan, issues relating to patients having access to their records, the opportunities as well as the challenges. how many people have signed up for access to their records, what others have said about patients accessing their records and guidance quality assured by the Royal College of General Practitioners and supported by the Royal College of Physicians and the Royal College of Nursing and over 40 different patient groups as well as others explining how clinicians can share their records with patients. Helping patients to understand what this means and ensuring patients and their loved ones understand the issues without it being onerous is how we can deliver a high quality safe service. We would like to thank all the patients, staff and clinicians who have been involved over the years to help us understand how to do this and to show this is not only possible but necessary too.