Our single-handed practice is recognised as an example of 'good practice' by the Department of Health1 because of its commitment to enabling patient participation. Supported by the patients, doctor and staff, the practice Patient Participation Group was instigated in early 1994, the year after I joined.
In 1995, the patients expressed a wish to see their own records. The Patient Electronic Health Record (EHR) Group met to plan how to achieve this goal, which was set well before patient access to records was included in The NHS Plan.2 The Government's plan has stipulated that EHRs should be universally available by 2004.
Patient groups were set up to consider the design of the new medical centre, EHR development and hospital service commissioning. Public meetings were held in 1996 to discuss IT development, a new building and fundholding.
The patient group wished to have as much general and personal medical information as possible, and to have access to information about services, audits and secondary services commissioned by the practice.
Meetings with the health authority and the doctor's architect followed, and a building was created to accommodate the needs of the doctor, staff and patients. This building included a patient-run information room, a patient meeting room and facilities for displaying and storing patient leaflets. This facility was run and updated by patients.
The 'Heartbeat' group
This group organised a blood pressure station within the information room, where patients take and record their own blood pressures. The group has designed and printed a coronary heart disease (CHD) risk card and all patients now use this.
A patient volunteer trains patients to take their own blood pressure and advises them on buying a machine. The card record will soon be superseded by a CHD risk computer system which will be used by professional staff and patients alike across the health authority. (Patient consent is included in the software which unfortunately involves double data entry!)
Diabetes and asthma patients monitor their condition in the same way. All patients are encouraged to keep their own records and drug sheets and to share the computer with their GP during consultations.
Patients gave presentations at and attended a patient-centred conference in London in May 1997, and decided to obtain the 'In touch' touch screen computer for use by patients in the information room. This is still in use and has had good use over the 4-year period.
Several other patient-led meetings took place between patients and professionals during the 4-year period.
Taking up the project
Interest following the conferences prompted a suggestion to bid for Electronic Record Development and Implementation Programme (ERDIP) demonstration status. The first bid was unsuccessful but the practice was later approached to apply again. This bid was successful, and together with a similar plan for Bury Knowle practice in Oxford, a project plan rapidly came together.
Meetings and communications took place with the NHS Information Authority (NHSIA) at their headquarters in Birmingham, with The Open Exeter administrators, with West Pennine Health Authority and – perhaps most importantly – with Eversheds, a large international company of e-commerce lawyers.
Eversheds gave advice on the complicated area of confidentiality, privacy and informed consent. Further information on these issues may be obtained from the NHSIA Confidentiality Team and from the NHSIA ERDIP website (www.nhsia.nhs.uk/erdip/)
Progress so far
Forty fully informed and contractually bound patients accessed their own records from the surgery in March and April 2001.
Access was obtained through a clever mouse that detected personal thumbprints and a name and password. The data were held on the NHSnet on a dedicated server. The data were accepted and displayed using Scratchpad – designed by Torex computing systems. Practice staff were on hand to answer queries and provide any necessary training.
Patients had one or more opportuniities to see their records and were interviewed before and after by means of questionnaires and by focus group interviews. The results are still to be analysed by UMIST and a researcher from Salford University.
We hope to extend the service to all patients who wish to utilise it within the practice, and to design a data engine that will automatically direct patients to appropriate general health data.
Improving doctor-patient communication
The reports of the medical defence bodies in the UK return continually to difficulties with communication, patients' misunderstanding of treatments and lack of proper informed consent. Patients trust their health providers to record and utilise all of their personal health information. Is this trust justified? Unfortunately the answer has to be no (see Figure 1, below).
|Figure 1: Old and new models for consultations|
Separate professions, hospitals, trusts, and laboratories keep their own unique records of patient data, which are not usually shared among different professionals and the patients.
Hospitals generally have only one set of paper records, which cannot be available in more than one place at a time. We have become immune to the delays that occur because of the geographical impossibility of one set of records being in two places at the same time.
The solution to this difficulty, of course, is the EHR. Patients could oversee their record and proactively state their allowed information flow and their own need for access to worrying data.
We believe that this option is becoming available and may be the only workable one. It will involve a change of culture and will put more responsibilities on patients.
In the new millennium, healthcare requires more self-empowerment of patients. Maybe the transparent health record will help patients to realise that we all now have to beat our own environmental and behavioural diseases to live full and healthy lives for ourselves, our children, and our grandchildren.
How will the project promote best practice?
Patients have been allowed to check their records, taught how to understand their contents, and allowed to utilise a practice website to interpret their findings, diagnoses and treatments.
Access to personal medical information will strengthen the doctor-patient partnership and enhance respect on both sides. Patients will be better informed before the consultation and will be able to take more responsibility for their own health.
We will be looking at how patients want to receive test results and information following outpatient appointments. We need to give patients a choice over what information they want to see and what information needs to come from their doctor first.
We feel that patient-accessed records will eventually lead to a form of clinical governance and informed consent in which patients can truly be involved in their care, keep up to date with their experiences and work together as partners and not adversaries. This will, in turn, allow patients to match their own care against national service frameworks – and why not?
- Department of Health. Involving Patients – Examples of Good Practice. London: DoH, 1997. www.doh.gov.uk/pcharter/phctip3.htm
- The NHS Plan. London: HMSO, July 2000. www.doh.gov.uk/nhsplan/index.htm