Sources, Nature And Types of Health Information

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Contents

Introduction

This Section - and the following 5 Sections of the course aim to take the student through a conceptual framework which starts with the sources of health information, then addresses how information is coded and represented followed by Sections on the processing, representation, sharing and delivery of information in a variety of settings. Two later sections then address the use to which the information may be used to improve the health system and make a difference. The last two Sections then explore the practicalities of making all this happen in reality, given the complexity of the Health Sector as revealed in the first two sections.

Major Learning Objective

The key to this section is to understand what information it is we are concerned with in the rest of the Unit, where it originates, how it is recorded and what might typically be stored - and where. Conceptually health information can be treated as being patient related (e.g. forming part of a patient record) or being information which supports health system actors perform better (e.g. management and clinical decision support, information data bases and so on.)

Why a Patient Record

Before addressing the record content it is important to consider just why a patient record is kept. Among the important reasons are: 1. To document the patient consultation with the clinician. This may include typically a clinical summary of the encounter with associated findings, recommendations and suggested follow-up. 2. To act as a reminder for or ‘aide-memoir’ of previous encounters and to record details regarding the patient which are likely to be static - such as date of birth, previous illnesses etc. 3. To act as a central point where patient specific documentation (paper or electronic) can be aggregated and accessed as needed. 4. To provide the capacity to develop a longitudinal (over time) record of the patient’s problems and their evolution or resolution. 5. To communicate to other clinicians, care-givers and increasingly the patient the present thinking regarding the patient’s situation and need for care. 6. To provide a record of a patient’s encounters with a clinician for medico-legal purposes, and possibly for patient identification. 7. To record encounters and treatments for the purposes of patient billing. 8. To facilitate clinical research on an individual or more typically aggregate basis as well as quality control and quality improvement. With this background what is held within the patient record becomes quite logical. Before discussing what is typically done at present it is worth pointing out that there is a long history of clinical record keeping. The history of clinical record keeping is very ancient and goes all the way back to the Greeks and Hippocrates. There is a two part review of the history of this aspect of Medicine - which comes rather close to being a history of the development of medical thought found here: The Clinical Record in Medicine Part 1: Learning from Cases. Full Text Available By: Reiser, Stanley J. Annals of Internal Medicine. 5/15/91, Vol. 114 Issue 10, p902. 6p. and here: The Clinical Record in Medicine Part 2: Reforming Content and Purpose. Full Text Available By: Reiser, Stanley J. Annals of Internal Medicine. 6/1/91, Vol. 114 Issue 11, p980. 6p. Despite their age this is an excellent pair of reviews and are mandatory reading. Also there is some fascinating material that is also quite old found here. Here we read of record keeping in the 11th Century (5th Century for Muslims) which sounds as though ‘there is nothing new under the sun’! Additionally those interested may find this web site interesting where 17th Century records which recorded clinical details and astrological information are discussed.

The search to make connections and to understand the causes of illness has been a very long path.

The Patient Record

In this section we review the typical contents of the patient record and discuss the sources of such information. It is worth pointing out that the information provided here is generic, may not cover all types of records and is applicable to both paper and electronic records.

Patient Demographic Information

This is the typical Name, Age (Date of Birth) , Sex, Address, Ethnicity and so on. This information is usually sourced direct from the patient (of next of kin) and is usually pretty stable over the years - except for the address. Often there are also some identifying numbers such as the Medicare Number and the Individual Health Identifier as well as possibly local hospital Medical Record Numbers. These are obtained from the patient or from electronic look up services (e.g. in Australia the Medicare Australia run Health Identifier Service).

Patient Active Problem List

The active problem list is developed by the clinician in association with the patient and is essentially a list of diagnoses which are currently having an impact on the individual’s health. Examples would include chronic acquired diseases (e.g. smoking related lung disease, coronary), genetic diseases and other ongoing conditions. This list would not typically include diseases which have fully resolved without ongoing problems - e.g. childhood infectious diseases, appendicitis following a successful operation and so on. These would be noted in the section on Past History.

Patient Medication Record And Allergies

This is a record of the current medications - both prescribed and patient selected that the patient is taking on a regular basis, and usually includes dosing details and the reason for the medication (indication) being taken. Patient allergy records both the type of allergy, the allergic stimulus and the nature of the reaction. It may also include any investigations / treatments undertaken to manage the allergy. Again this information is sourced from clinician and patient jointly.

Patient Past Medical / Surgical / Obstetric History

This is the section of the record where resolved issues and illnesses are recorded with the approximate time of occurrence. e.g. Appendicitis leading to appendicectomy aged 12. Full term pregnancies (uncomplicated) with live issue 10 and 8 years ago. Dislocated shoulder - football injury - aged 20. This information can often be a little vague as many people struggle to remember details going back 20-30 years. This information is usually sourced from the patient - or possibly from previous clinicians’ records etc.

Patient Family History

This section - usually sourced from the patient - aims to uncover illness in a patient’s family which may have a bearing on the individual’s health and outlook.

The Encounter Record

This is the section of the patient record that typically relates to a clinical consultation and the associated activities. A useful approach to recording each clinical encounter is called SOAP. SOAP stands for Subjective, Objective, Assessment and Plan.

  • Subjective.

This covers what the patient is concerned about and what they are feeling in terms of symptoms. It will also include the history of those symptoms and relevant negatives obtained from questioning the patient regarding what is troubling them.

  • Objective.

This section of the record covers objective information that is related to the patient visit / encounter. This may include physical findings (arising from examination of the patient) and the results of investigations undertaken to confirm clinical findings.

  • Assessment.

This section of the record covers the diagnostic conclusions reached on the basis of all the information gathered in the previous two steps.

  • Plan.

This section documents the clinician’s recommendation for treatment and follow-up for the patient. As would be obvious a patient record can grow over time with each encounter resulting in an individual record which provides a chronological perspective to what is happening to the patient and a more stable patient header record which is updated as problems and issues are resolved or become more chronic issues. In this discussion it is clear that there are a range of sources of information that come into the record from outside the actual consultation. This includes laboratory results, imaging results and a variety of specialist investigations. As with the core information this can also arrive either on paper / film or electronically if the record is able to accept such information.

Publicly Accessible Health Information

Separate from the professional information used to support patient care or management of the health sector there is of course a wide and rapidly expanding range of publicly accessible health and disease information. It would be fair to say that this body of information has been dramatically expanded in both scope and availability by the Internet - with information designed for public use being all things from the highest to the lowest quality. This link provides an invaluable insight into how the public is now using such information and what they are accessing and why.

As far as assessing the quality of health information found on the internet the Australian Government provides a useful site with some very useful suggestions to follow: How to Assess Health Information Online Indeed this site and the others listed here are a very useful source of trust-worthy health information links for consumers.

Clinical and Management Decision Support Information

An emerging theme in delivery of clinical care over the last decade or two has been the recognition of the difficulty of remaining ‘on top’ of best clinical practice and the rising complexity of the decision making faced by practitioners. To address this issue there has been the progressive emergence of paper based and electronic tools to make things hopefully manageable.

Clinical Decision Support Information

The oldest and most basic form of clinical decision support has to be the general or specialist medical textbook and monograph. These are a well-known tool and need little further comment. Next in complexity is the formal medical literature. For most of history this literature has again been on paper - with efforts at improving accessibility using computers beginning in the 1960s with Medline - which was initially a book (large volumes) where the literature was linked by coded content -which was published regularly from a computerised database. Eventually the database became available for searching in the 1980s and finally became available on the Web during the 1990’s. The use of computers, first as catalogue managers and later as windows to the contents of the whole medical literature has been a very considerable advance in terms of information accessibility.

  • The US National Library Of Medicine (NLM) has been absolutely central to the developments around the management of and access to medical literature.

A brief history - from its founding in 1836 to the present is found here For those who are interested more detail is available at a website celebrating 175 years of the NLM.

Beyond basic text-books and the medical literature in its present overwhelming vastness - a feeling for which can be gained from a recent report indicating that overall there were 1.3 million academic papers published in over 23,000 journals in 2006 (see here ) - is the ever expanding production of expert clinical guidelines to help clinicians through the maze.

  • Guidelines are typically produced by expert committees under the auspices of a learned society relevant to the contents or a relevant Government agency (e.g. in Australia under the auspices of the NH&MRC).

In Australia there is a searchable Clinical Guidelines Portal that is found here

This site describes the processes of guideline development, registration and so on. The purpose of developing such guidelines is to provide authoritative information for practitioners free of ‘noise’ and offering a consensus view as to the best path to be adopted in the diagnosis and management of reasonably common disease entities. In the US the Agency for Health Care Quality and Research (AHCQR) there is a similar service provided at this site

A selection of other international sites which offer guidelines is found here In addition a variety of sites provide access and search services to guidelines - already developed or purpose developed for an information provider. Examples include the Map of Medicine which was developed in the UK and a range of commercial services. An example of commercial / subscription services is Medconsult Another service from the same provider is also worth a look here All these resources are worth reviewing to get a feel for what the web has to offer in the way of highly credible resources. A continuing problem for all such guidelines is areas where research either evidence is conflicting or non-existent on what is optimal treatment. The Obama Administration has allocated $1.1 Billion to try and get answers to some of the more pressing issues. The other key area that needs brief discussion in this section is the notion of Interactive Real Time Clinical Decision Support (CDS). More discussion of CDS is provided in Section 9.0 but the essential concept is that the computer that is being used to capture clinical information then uses the captured information to advise the practitioner, at the point of care delivery, on the suitability of what treatment the practitioner is planning. An example might be where an allergy is recorded and when a clinician goes to prescribe that medication an alert is presented reminding of the allergy. A comprehensive text on the area is the following: Greenes, Robert A. (ed.) 2007, Clinical Decision Support - The Road Ahead. Elsevier Science The recommended text book provides coverage pp 195-197. For successful CDS the key is that information that is captured within the patient record is properly defined and coded so it is possible for automated inferences to be drawn from the information. To have this happen successfully requires careful consideration regarding the design if the information capturing systems.

Management Support Information

In this section we review the sources of information that are needed by those who manage the health sector to improve the efficiency, quality and safety of their services. In this context there are three key types of information that are needed.

  • First is cost information. The complexity of this area is not to be underestimated as what is really needed for management decision making is a cost for a particular service or service line. This necessarily includes labour, consumables, overhead costs and so on. The more you drill down seeking to cost a particular service or procedure the more the complexity can start to frustrate due to the need to estimate so many components of any final cost.

The approach being adopted in Australia - and in much of the rest of the world - is called Activity Based Costing (ABC) - and from a Government perspective this becomes Activity Based Funding (ABF). There is a useful summary covering what is planned found here:

  • Activity based funding explained

Under the National Health Reform Agreement, the Commonwealth, states and territories agreed on major reforms to the way hospitals are funded and operated. In August 2011 COAG (Council of Australian Governments) agreed to establish Activity Based Funding (ABF) as the primary funding methodology for public hospital services throughout Australia. A national efficient price will be used to calculate the Commonwealth’s contribution to public hospital funding. It was estimated that without changing the existing funding approach, health services would consume the whole of state budgets by 2045-46. In previous years, states and territories experienced growth in health spending of around nine per cent. This contrasts with the growth in state and local government tax revenues of around six per cent a year over the same period of time. Full article can be reviewed here The references associated with the paper provide a reasonable background to what is happening as of late 2012.

When you review this material the complexity of the financial information that is needed will quickly become apparent with information needed from payroll, purchasing, inventory and fixed asset systems.

  • The second type of information that needed to be in the mix is diagnostic information - ideally in a coded form. There are a range of coding systems that are used to try and simplify the handling of the information but it is important to recognise that the initial source of the information has to be a clinician who ascribes diagnoses and procedures to the patient. Once the diagnoses are made then the patient diagnostic and treatment information is coded to allow the counting and statistical analysis of diagnoses and treatments.

In Australia the Government is actively involved with the Diagnostic Related Group (DRG) development and maintenance program. DRGs are used for coding of hospital based encounters both admitted and outpatient. The current activity with this area is summarised on the Department of Health web-site which is found here: http://www.health.gov.au/internet/main/publishing.nsf/Content/Casemix-1 In general practice there are a range of diagnostic coding systems used. These include DOCLE, ICPC and a number of others. Note: The diagnostic information cited in this section are what are called ‘classification systems’ and are to be distinguished from clinical terminologies which are used for purposes such as clinical decision support rather than for statistical analysis or costing. These various coding systems typically result in a numerical code which is not in any way meaningful and are really only suitable for computerised use and analysis. The link between diagnoses and the associated codes is typically contained in internationally maintained data-sets and often modified minimally for local national use.

  • The third and hardest to collect in a meaningful and useful way is patient outcome information. This is because patients tend to become more difficult and expensive to follow-up once they have left a particular facility. For this reason simple and easy to collect information such as discharged alive or dead, re-admitted within 28 days or unexpectedly, and other clinical outcomes in more detail and at more distant times. In order to address the cost and difficulty of collecting such information a variety for follow-up and sampling approaches are usually adopted.

As might be expected a variety of coding and classification techniques are used to allow effective use of the information collected. Additionally there is what I would term operational information for the hospital or the practice in terms of patient numbers, waiting times, occupancy information, patient satisfaction information and the like.

Research - Clinical, Management and Treatment

This is just to point out that all the information gathering described above can also be applied to research activities - based on information that has already been collected or which is collected prospectively to address specific questions. From the preceding discussion it can be seen that there are a vast number of information sources and all sorts of ways of combining information to extract useful and intelligible information for the raw data.

The Management of Information

The management of this information can be undertaken in a variety of ways that will be explored in later sections of the course.

Social Media

The emergence of the Internet and World Wide Web followed by that of social media (Facebook, Twitter etc.) has meant that the consumer has a wide array of channels which they can locate, discuss and share health information both among themselves and with providers. These channels are now also being used for things as diverse as a mechanism to recruit clinical trial subjects and amazingly to track the spread of illnesses by Google keeping statistics on the number of search requests related to various symptoms. When the contents of such communications are merged with the emerging business analytics and other research tools it is clear some interesting information will emerge over time.

Genetic Information

The emergence of cost effective individual DNA analysis has resulted in a whole new category of information becoming potentially available and exploitable in the context of more basic health information records. We are yet to see just how this information will be recorded and used but, given the fact we are already at the threshold of an explosion in genetically based personalised medicine, we can be confident such information will become vastly more important over time.

Concluding Remarks

It is clear from what is covered in this section that there is a very diverse array of information types and sources that are used by clinicians. researchers and managers in their decision making. All this just confirms the view taken by this unit as a whole regarding the centrality of how information is sourced, coded, processed and deployed in the overall success of the health sector’s service delivery. The other clear trend is the progressive empowerment of the consumer in their level of access to, and understanding of, health information as related to their individual circumstances and the diverse sources from which such information is now coming. In the following sections we will review just how the information is actually used having been sourced. Textbook - Pages 31 to 52 are relevant to this section of the course and should be reviewed.

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