- Pattern Languages
- Liberating Voices (English)
- Liberating Voices (other languages)
- Civic Ignorance (English)
- Digital Resources
Patient Access to Medical Records
Pattern number within this pattern set:95
Tameside & Glossop PCT, UK
Patients and the public traditionally have very poor, if any, access to information in their medical records. Unless they are with a personal doctor who knows them well, many patients have great difficulty describing their condition accurately. At the same time, the clinician whom they are seeing is expected to provide excellent care without having up-to-date information about their patient's health. To compound the problems further, medical records often contain inaccuracies of which neither patient nor medical providers are aware.
Over many centuries, medicine has identified and studied diseases, and developed treatments that now benefit individuals and societies. However, the more treatments there are, the more they need careful monitoring for serious side effects or interactions with other treatments or conditions a patient may have. Patients therefore need increased contact with the medical profession, and this contact is increasingly fragmented among many practitioners and disciplines. This complexity creates unnecessary tests and clinician appointments, as well as an increasing risk of litigation. Patients and the public see rising costs, more demands on their time, and decreasing understanding of their health.
As healthcare in developed countries becomes more complex, more sophisticated and expensive systems are being put in place, with no proof that delivery of care is improving. Inasmuch as these systems succeed in reducing costs, they tend to benefit the large public and private healthcare providers who sponsor them. They constitute ever more effective electronic filing systems for information about patients, but which those patients neither see nor use.
We live in a world of choice, and if there is little access to information about patients there is plenty of other information for them. More and more, the public seeks information so as to choose among their options for treatment. At the same time, more and more is available on the Internet (e.g. www.nhsdirect.nhs.uk) for those who want high quality information about health and well-being.
Simply providing information is a job half-done. Until patients can work with their own health indices, such as blood pressure, blood sugar, cholesterol and diabetes status, for example, they will find it difficult to relate information they find on websites to their own health. Secure systems already exist for patients to add blood pressure and blood sugar data to their records (UK Doctors, 2003). Clinicians welcome such information when determining a patients treatment management plan, especially if it can be easily found in one place. Clinicians who have experienced patient-maintained personal health records in become enthusiastic about the practice (Protti, 2005).
Traditionally, the medical practitioner has provided a bridge between medical knowledge and the patients themselves. If a treatment plan did not perfectly match the patients needs, or if the patient was challenged by changes or crises, then the practitioner would take responsibility. Nowadays, there is seldom a single clinician involved in any patients care; no single person is in a position to mediate between the complexities of medical technology and the real-world experience of the patient. Patients themselves are willing to contribute to this role; they are clamoring for access to their full electronic health records so as to see for themselves what clinicians have written about their individual consultations, the results of tests they have undergone, letters that have come back from specialists, and what medications they have been prescribed both in the present as well as in the past.
Fulfilling the goal of active patient involvement in healthcare through access to medical records offers many opportunities and challenges. Patients could verify the accuracy of their medical records (Cross, 2005), and access their medical records wherever in the world they travel. Given proper controls for privacy and confidentiality, patients could share their information with others if they so wish. Given professional protocols between medical practices (the lack of which has led to bad outcomes for patients in the past), availability of information on patients should be protected at all points of healthcare service delivery. Some patients may find some information in their records upsetting, while equivalent information may help in the treatment of other patients or other conditions. Patients may need protection from seeing some information about themselves before a clinician has discussed it with them, and this may limit a patient's choice to access to full information. Information about a patient gleaned from a third party requires careful treatment before it is entered into the record.
The clinicians role as mediator between medical expertise and the patients experience will never go away, but it will change. Some of the opportunities of patient access to medical records may save clinician time, and others may not. Some patients will thrive on the ability to combine health information on the Internet and elsewhere with information about themselves from their medical records; others will not. With the right of online access to medical records comes the responsibility to deal with the information presented on a computer screen. The informed and responsible patient, comfortable with interpretive tools for making sense of medical data, has greater trust and confidence in the medical profession. Such changes in health behavior cannot be left to the technology and the information; they may require emotional support that depends upon some degree of human intervention.
Online recording of medical information by patients is already being done (www.ihealthrecord.org; www.healthspace.nhs.uk). Online patient access to medical records is beginning (www.paers.net; Bos, Fitton & Fisher, 2006), and it presents a cutting-edge challenge for practical trust between patient and clinician, and amongst medical providers. Medical records are being put online anyway, and over time they will become increasingly interoperable; the challenge is to make record access not merely a cost reduction measure for administrators and providers, but a tool for patients and their families to participate in their own healthcare.
Use patient access to online medical records as a bridge between the precise art of medical science and its practice as the patient experiences it. Let the public, patients, clinicians and other healthcare providers have up-to-date access to accurate medical information, regardless of location. Develop robust systems to protect privacy and confidentiality. Above all, educate and encourage practitioners and the public in patients use of online medical records to actively manage their health.
Themes:Research for Action
Verbiage for pattern card:
Patient access to medical records can bridge between medical science and its practice as the patient experiences it. Let the public, patients, clinicians, and other healthcare providers have up-to-date, interactive access to accurate medical information. Use robust systems to protect privacy and confidentiality. Above all, educate and encourage practitioners and the public in patients' use of online medical records to actively manage their health.
Information about introductory graphic: