A group of patient access to medical records enthusiasts and pioneers have been discussing the future of digital healthcare. The relationship between data and information becomes quite significant as can be seen by the precis's conversation. Personal health data in a patient record has very strong governance attached to it ensuring a high degree of truth. The employment and income of healthcare professionals depends on their data/information integrity.
Richard
"What is the difference between “patients’ access to and copies of records” and “patients access to and copies of their health data”?
The difference goes to the heart of the dilemma that professionals face. Professionals’ records belong to professionals. They are notes of their thoughts or aide memoires, or their considerations, made for medico-legal purposes. They may inadvertently contain things that may breach privacy or lead to misunderstanding, or risk breaching the privacy of others when taken out of context. Professionals should be free to make their records. However, the professionals’ records contain large amounts of health data, which their patients should have access to and have copies of.
Clinical record standards require that “Adequate medical records should enable a clinician to reconstruct the essential parts of each patient contact without reference to memory. They should be comprehensive enough to allow a colleague to carry on where the clinician left off. If the patient has a record subfolder within an organisation it should be available to the health care professional at the point of patient contact. If the patient has been referred or transferred from another health care professional, a clinical communication should be available to the receiving doctor at, or ideally before, the point of patient contact. If the patient does not have a record subfolder available and does not have a transfer communication, then an up-to-date summary of the patient's health and illness status and treatment should be accessible to authorised senior medical staff. Data entry should be with no more difficulty than with paper systems after appropriate training.
Citizens or patients should have “access to, and up to date copies of all their health-related data and information and to be able to communicate effectively and efficiently with their virtual health team, who likewise must be able to communicate with each other. The current term used for the latter process is “transactional information and communication”. Looking at a cryptic list of things in a health GP record does not help unless the patient is clever enough to dig the stuff out that they might be interested in. Patient data should be presented in a way that is useful and meaningful and relevant to the context of their use.
Patient apps are now getting there, but are held back by the NHS app which is now good at some of the transactional things, but poor at personal information use, because it has access to your records but no access to your data. Access to your data is not part of the current transaction. The push for “access to the full record” will always be blocked and we could push for access to the data in the record, just as you started off, but presented in a more sophisticated and organised way.
At Hadfield we gave patients copies of their health data on CDs (1996 to 2001!) which had been coded according to the International Classification of Diseases and into a lifelong format to give context and a sense of ownership to the patients - using the "intelligence of information intelligently".
Patients, and families, require data, knowledge, context, information, and knowledge from their medical records, intelligence, to understand, to think critically, to manage their own care and to communicate better with professional staff. [Health-literacy-how-to-guide.pdf ] These terms require some clarification. Data are facts and statistics, collected for reference or analysis. Information is data presented in a way that can be comprehended. Knowledge is the product of two or more pieces of information or data with reference to one piece of data. Understanding is the product of the application of two or more bits of knowledge to a piece of data or information. Wisdom is the product of observing the repeated effect of the application of knowledge and understanding to data. Intelligence is the capacity for abstraction, logic, understanding, self-awareness, learning, emotional knowledge, and reasoning [Wikipedia]. Critical thinking is the process of analysing available facts, evidence, observations, and arguments to make sound conclusions or informed choices. Agency is the ability to act and respond to the data, information, knowledge, understanding, and wisdom.
“Critical thinking involves recognizing underlying assumptions, providing justifications for ideas and actions, evaluating these justifications through comparisons with varying perspectives, and assessing their rationality and potential consequences.[1] The goal of critical thinking is to form a judgment through the application of rational, sceptical, and unbiased analyses and evaluation.[2] Portals and AI can transpose data and information into knowledge and understanding for patients without the help of the doctor. AI linkage of the patient’s records and care pathways to open access to scientific literature with its means free availability on the public internet, would permit patients to read full texts of scientific articles. Personal health data in patient accessed records can be digitally linked to knowledge, understanding, critical thinking, and intelligence.
Patient agency refers to the patient's sense of control, responsibility, and ability to influence their own care, which can enhance health outcomes. Patients, communities, and families who are given the data, information, knowledge, education, and understanding can have the agency to perform some healthcare themselves in partnership with the service provider.
Health literacy refers to the personal characteristics and social resources needed for individuals and communities to access, understand, appraise, and use information and services to make decisions about health. and to enact these decisions. Patients and families who take responsibility for long-term care require data, knowledge, background information, context, understanding, intelligence, and critical thinking to manage their own care and to communicate better with professional staff.
HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data Email address: richardpeterfitton7 AT gmail.com