Why is this only a Pilot for few Practices?
EMIS www.emis-online.co.uk and PAERS www.paers.net have developed a solution that allows patients to access their personal full General Practice-held record over the internet. In the USA this is very common, but about 20 practices in the UK also provide this service. We are part of a pilot to roll-out this service nationally.
Our feedback and your feedback as patients will help make the system better and more importantly available more widely.
UserCare - Website explaining more about Electronic Health Records & the consultation.
There has been an intense amount of interest in the different approaches but particularly the EMIS/PAERS solution in the lay press, radio, in specialist journals such as the BMJ and at a number of conferences that have taken place around the country when the EMIS/PAERS solution was launched and subsequently as more and more people have heard about it. The much-vaunted NHS programme is only now about to start loading basic clinical details on to the care records "spine". These will contain only the allergies and current prescriptions of patients at a few primary care trusts.
Are there a limited number of patients you will allow to sign up?
Unfortunately Yes. We have to limit the number of patients who can sign up while we assess the impact on the essential services we provide and learn from any problems that arise. Therefore, over the next few weeks we will build up a list of 50 patients who have expressed an interest in using this service. We will then invite selected patients to join the service and start using “MR ACCESS” before rolling it out in stages to all patients.
Can I access my children’s records on MR ACCESS?
During the Pilot, we are only signing up access for patients aged 16 years or older. In future, we will allow access to children’s records for parents or legal guardians, but only those with “parental responsibility” – a legal term. Parental responsibility for your child gives you important legal rights as well as responsibilities. Without it, you don't have any right to be involved in decisions such as where they live, their education, religion or medical treatment. With parental responsibility, you are treated in law as the child's parent, and you take equal responsibility for bringing them up.
Should MR ACCESS be activated for your child, it is likely to be withdrawn when the child reaches the age of 12 years, as The Courts have ruled that some children are competent to reach informed decisions about their medical care and treatment. Around the age of 12, and sometimes earlier, a teenager may rightfully (according to English Law) expect to consult about private matters with a GP without knowledge of this being available to their parents or legal guardians. Healthcare professionals will advise children to involve their parents but we cannot enforce this advice or breach patient confidentiality.
Can you tell me more advantages?
Medical Records Access for patients is likely to become standard practice in the NHS, and this system is secure and convenient for patients. People are becoming more interested in the information on their own health what they can do about it. Users of this system start to take ownership of their own records instead of leaving it to the doctor. It establishes a new openness with your doctor and a genuine partnership of trust. In practical terms, it means you can order repeat prescriptions, check when your appointments are and see letters to the hospital and results of your lab tests as soon as they reach the surgery. You can keep an eye on your records and check discussions with your doctor have been accurately recorded. For some, the most important feature is that, should you have an accident anywhere in the world if you grant permission medics can gain instant access to your medical records, which may save your life.
In our view, it shows yet again that, with simple safety procedures in place, MR ACCESS can be offered safely and with great benefit to both patients and clinicians.
Copying letters to patients - In a welcome move, Patricia Hewitt, Secretary of State for Health has reminded Trusts about their commitment to enabling patients to see correspondence about them. Of course, if full record access becomes a reality, patients will have easy access without Trusts or practices having to copy individual letters.
In the United States, everyone who enrols with Kaiser Permanente can access their personal health records on line. When patients move states, continuity is maintained through local Kaiser doctors who can access the common record. Other large US health providers and independent organisations also provide on-line personal health records. More about USA methods of online records access.
In the future, NHS Connecting for Health may surprise us all and deliver on its promises. These include patients' access to a limited "summary care record" accessed via www.HealthSpace.nhs.uk. Meanwhile the European Union's quest to put personal health records on common European health cards continues.
We see that the MR ACCESS approach can transform current medical practice. Record access can harness the record as a personalised tool for:
- supporting shared decision-making
- informing patients about their condition and their management
- showing patients what good practice in their personal care should look like
- improving the accuracy of the record
- making care safer
- helping self-care particularly with chronic illnesses
- enabling the patient and/or their carers to coordinate often fragmented care
- reminding patients of key stages in their care pathways
- managing information relevant to lifelong health and wellness
Further information on record access and worldwide contacts is available from www.icmcc.org
What if I am not granted access?
Medical Records access at home via the internet is not everyone’s wish and sometimes patients would just prefer to trust the doctor to manage their care. You may feel confused if reading some technical terms and get worried. Everybody has a right to see their medical records and should be allowed the freedom to do so, but some patients would find it more reassuring to do so sitting down with a doctor looking together at their paper and electronic records. Remember, it is a GMC direction to doctors that they have the right to withhold details from a patient that are kept on that patients medical records if the doctor believes it will harm or distress the patient.
As mentioned elsewhere, our Practice is mindful of The Data Protection (Subject Access Modification)(Health) Order 2000 (SI 20000/413) which exempts health records from the general right of access where such access would be ‘likely to cause serious harm to the physical or mental health or condition of the data subject or any other person’. (quoted from Bridget Dolan, “Medical records: Disclosing confidential clinical information” Psychiatric. Bulletin., Feb 2004; 28: 53 - 56.) In other words, if your records contain substantial third party information or we feel disclosing all information may cause harm to you as the patient or to the information giver (eg such as causing difficulties in a GPs future relationship with the patient) then we have a statutory duty to withhold it from the you. Therefore, on rare occasions permitting full online records access may not be appropriate. This can only be considered on a case by case basis. This would possibly apply to very few patients, and we would be prepared to grant supervised access by inviting you to a meeting with your GP who will go through your paper and electronic records in a more controlled and supportive environment.
What do doctors worry about with MR ACCESS?
Some doctors worry that patients will not be able to understand the words used, or how we will ignore slightly abnormal blood test values. These issues are part of how a doctor is trained to give an objective assessment of a patient – an overview. This could lead to conflict, if for example a patient believes the doctors impression, often briefly noted does not tell the whole picture. It has to be understood that doctors write in a form of short-hand sometimes, to aid their recall of significant findings for the next appointment. The doctor may see 40 patients per day, and make 50 telephone calls to patients, so does not have time to write detailed notes about every encounter with patients in general practice. We are unable to quote you “word for word”. Sometimes, we are typing fast and make spelling mistakes or may forget something – we are only human! Sometimes, we state medical opinions about mood or lifestyles or describe patient’s behaviour in a way that provides us with important information to guide your treatment. We do not mean to offend you, but may state matters frankly, or “cut to the truth of the matter”. We must feel able and supported by our patients in continuing to do this, as our common aim is to improve your health and the care you receive from us, from the next GP or at the next Hospital appointment.
Records Access for patients - How does it lead to improved clinical care?
Firstly we need to be clear on what we mean by improving clinical care, because this can mean different things to different people. I would define it as follows.
Get the basics right. This starts with good consultation skills eliciting a comprehensive history and examination with appropriate tests and other investigations.
Ensure the facts have been noted appropriately within the clinical care setting for all members of the clinical team to see. Most chronic conditions are managed by a large multi-disciplinary team - good communication between them is paramount.
Be clear on what the clinical goal is that we are trying to achieve. Ensure there is a clear management plan so that all can see the direction of travel and why certain steps have been taken and on what basis, ideally with reference to previously agreed guidance/guidelines / protocols.
Ensure there is good advice available on what to do if patients fall outside expected parameters so that clinical care can re-appraised as soon as possible. Regularly audit the work that is carried out comparing current practice with standards agreed by the clinical team or organisation we work for.
Patients can use their access to help make consultations more efficient. Instead of spending time giving the details of results or letters, time can be better spent talking about the implications of them. It encourages patients to think about those things that are important (e.g. lifestyle advice) and safe appropriate alternatives which they can learn from for future use (e.g. where to go with minor self limiting ailments/ illness).
Finally, Records Access helps to reduce errors or omissions because patients are not only relying on the practice to act on any information about the patient. A raised blood glucose that accidentally gets filed away could be picked up on by the patient even if it has been in the records for months or years.
Dr Dave Barrett
Harnall Lane Medical Centre