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House of Cards or a Personal Health/ Development Portfolio?
- E Jane Flint, DY1 2HQ (17 April 2007)
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House of Cards - Patients' view
- Frederick C. Webber, John J. Hewitt (30 April 2007)
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Re: House of Cards or a Personal Health/ Development Portfolio?
- Richard Fitton, 82 Brossctoft Hadfield Derbyshire SK13 1DS (1 May 2007)
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E Jane Flint, Consultant Cardiologist Dudley Group of Hospitals, DY1 2HQ
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Whilst we must applaud the idealistic aims of the NHS National Programme for IT there are clearly many threats beyond just private initiatives allowing patient access. The electronic contortions surrounding access yet confidentiality exemplify the high financial costs of the programme. As the author points out, the cost-effectiveness of ePHR in improving patients' outcomes is unproven. I am most concerned that the central need to empower patients and carers with possession of their own health information, the most likely factor to improve health outcome in a consensual clinician-patient consultation, is paramount. When a patient's notes are missing in outpatients, or in a future world where the all-important computer is "down", the patient's own health and development portfolio detailing essential clinical events, investigations, interventions, medication, correspondence, relevant background literature, expert patient training and governance involvement, will be invaluable. During these interim days before IT utopia, the conventional paper- based record remains the cornerstone of care documentation. For most patients still, a paper-based personal account hand-written or printed off the home computer, is the most useful detailed account in many cases to back up key clinical summaries. When essential finance for NPfIT has to be released from storage/retrieval of paper records - or ideally before that time - I do hope that patients will be offered care of their NHS paper record rather than its destruction, as well as the opportunity to interact with their developing ePHR content. Jane Flint Consultant Cardiologist and Trustee Heart Care Partnership UK, empowering cardiac patient associaions for the British Cardiovascular Society and Royal College of Physicians, Dudley Group of Hospitals, West Midlands, DY1 2HQ. jane.flint@dgoh.nhs.uk 1. Cross, M House of Cards BMJ 2007; 334:772-3 Competing interests: None declared |
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Frederick C. Webber, Retired Patients. Hadfield Medical Centre, Glossop. SK13 1DS, John J. Hewitt
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The article by Michael Cross posed two important questions. The first of these is "Will private initiatives allowing patients to access their health records threaten the UK's National Programme for IT". A Patients' eye view might be of some interest to add to the discussion. The writers are patients at Hadfield Medical Centre (HMC) who, like many other HMC patients, have held CD copies of their medical records for up to about seven years. Patient held records create an adult to adult relationship The most significant change that we have experienced ourselves and also seen with other patients who carry their record is one of ‘knowledge’ and ‘ownership’. This results in a psychological shift in the doctor patient relationship from one of external control, where the doctor exerts control with a passive patient, to one of internal control where the doctor advises a knowledgeable patient in a two-way ‘adult’ relationship. I am sure our GP would agree that this ‘maturing’ of the relationship makes appointments and other contact time very productive and increases the quality of care which we receive. We are so convinced by the need for our experience to be shared with patients at large we have produced a web site www.usercare.info to assist those who may have access to their records now or in the near future or anyone who aspires to take control of their own health and wellbeing by understanding the complex relationships between health, illness and disease. Patients can explore and access everything in the on-line record While agreeing that giving patients access to their records is a "good thing", the CDs provided are up-to-date only to the moment of downloading from the practice system. Updating is required after each significant medical event. In our view the full benefit of patient access to their records will only be available when patients can freely access the complete and up-to-date record via the internet. Worry anxiety and despondency are caused by new symptoms. Information cures these feelings if not the "disease". Patients and families feel better having the truth but currently may wait days, weeks or months to hear (but not see) the results that have been available but not shared with them during those days, weeks or months (or indefinitely). Different patients and their families will be interested in different parts of their records according to their education, beliefs and experience. We will not find out what is useful for them in a record if we dont let them use it!! Patients will use their records to improve clinician communication Additionally, a patient may want a second opinion or move to another provider and will want the specialist to see everything that has been done already and not to have to repeat the costly tests causing delays and expense. Connecting for Health accepting other initiatives and enthusiasts Some months will elapse before Connecting for Health begins to roll out its National Care Record system using Healthspace as the access vehicle. In the meantime, what Michael Cross refers to as "private initiatives", will provide a relatively small number of fortunate patients with the opportunity to experience patient record access. In our view these "private initiatives" represent pioneering activities which must be applauded and encouraged. Far from threatening the UK's National Programme for IT, these "private initiatives" are providing a means of informing the public, or parts of it, of the information, skills and attitudes which will become necessary for patients to get full value from the system. Arousing and enlightening the national consciousness The majority of the population know very little about the detail of the work of the NHS Connecting for Health and have been given little information by way of preparation for the introduction of the electronic care record spine. Electronic records will change many of the basic assumptions and practices of health care. As the number of "private initiatives" increases, so the body of patients gaining knowledge of the concept will increase. Many of these, in turn, will publicise the introduction of the national care record scheme. Patients at Hadfield are becoming more aware of the many benefits that their access to health records bestows upon their health and care. There has not been a lot of research because there has not been a lot of access The second issue, "...whether electronic personal health records improve patients' outcomes", raised by Michael Cross is rather more difficult to comment upon as It tends to rely upon personal knowledge and experience. Michael Cross pointed out that the Nuffield Trust believes that electronic personal health records "have the potential to impact positively on the delivery of care ..... but require further research to demonstrate the objective benefits.....". The first and obvious response is to point out that there has been little or no research on the effect of record access on health, primarily because there has been little or no record access. Patients’ qualitative experience of record access The second response to Michael’s second issue is for us to recount our personal experiences of the ways in which patient access to health records has promoted better health and improved outcomes. When given access to our complete records, we were provided with a foundation of essential information to enable us to pursue, and extend, our knowledge of our medical conditions. This helped us to understand the treatment, and health management strategy which was being considered or implemented. Importantly, it enabled us to contribute positively to the decisions being taken for our healthcare. We were encouraged to take an active part in joint decisions and this gave us confidence that the management plan was appropriate and had the potential to benefit us. Compliance with treatments We feel that record access generated a high level of compliance with our prescribed treatment and management plan because a considerable amount of responsibility had been passed to us for the self-management of our own healthcare. We have also been given a greater opportunity to tailor the treatment to our histories and beliefs. As informed patients we have become better able to judge whether altered function required medical attention or whether self-medication was all that was required. This, we feel, leads to fewer visits to our GP. As informed patients we were able prepare a few essential questions before a consultation. The consultation was more focused and productive, without the necessity of lengthy preliminary explanations of issues that we were already familiar with. The result, we believe, is a reduction in time spent with the doctor without any parallel loss of quality in the healthcare we receive. Does record access improve patient outcomes? From our experience, yes. As the Nuffield report points out, much of the evidence available on this issue has been gathered by "small scale pilots run by enthusiasts". Throughout history the efforts of dedicated amateurs and pioneering enthusiasts have led to the development of world- changing inventions. Think of the appearance of the steam locomotive, the horseless carriage and the heavier than-than-air flying machines! Let not academics cast a disparaging shadow over the achievements of these small groups of enthusiasts. Their influence has been, and continues to be, at the centre of developments of ePHR and patient record access. John J. Hewitt & Fred. C. Webber Patients, Hadfield Medical Centre, Glossop, Derbyshire. Reference: Munir, S. & Boaden, R. (2001) Culture Change at Hadfield Medical Centre. NHS Information Authority Competing interests: None declared |
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Richard Fitton, GP Manor House surgery Glossop Hadfield Medical Centre, 82 Brossctoft Hadfield Derbyshire SK13 1DS
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Dr Flint is correct about patient held records. Over 10% of my patients have had copies of their complete GP records. The use them for many purposes. They frequently share them with their own families especially as they become less independant or lose some of their own advocacy skills. They give copies to their relatives for the future if ancestors have genetic disorders. The patients agree strongly with Dr Flint that the records should be offered to patients before they are going to be destroyed. Competing interests: I am a director of a patient run self care company specialising in electronic records |
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