How computers can help to share understanding with patients
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This document provides an overview of how computers and interactive health applications can help doctors share information and clinical understanding with patients. It discusses the case of Ms. Patel, who met with her doctor and genetics clinic team to discuss her family history of breast cancer and 30% lifetime risk of also developing breast cancer. The team created a genogram to visualize her family history and risks. The document then discusses the benefits of interactive tools for improving patient understanding, reducing uncertainty, and better supporting patients. It provides some examples of how images, videos and other multimedia can help explain clinical information to patients during consultations.
How computers can help to share understanding with patients
- 1. Clinical review ABC of health informatics How computers can help to share understanding with patients Frank Sullivan, Jeremy C Wyatt In the second article of this series (BMJ 2005;331:625-7) Ms This is the fifth in a series of 12 articles Patel found a lot of material on the internet and spoke to family A glossary of terms is available at http://bmj.com/cgi/ members about their health and the causes of death of some content/full/331/7516/566/DC1 family members. Ms Patel discussed this information with her general practitioner (GP), who then referred Ms Patel to a clinical genetics centre. The genetics clinic team converted Ms Patel’s understanding of the situation into a genogram using Risk Assessment in Genetics software (RAGs). A cancer registry was used to find the cause of death of Ms Patel’s older sister because she had died overseas. By integrating multiple sources of information the genetics clinic team could Ms Amulya Patel is a 48 year old accountant whose advise Ms Patel that her lifetime risk of developing breast cancer mother and possibly two sisters have had breast cancer. was about 30%, and that she would probably benefit from Because of her family history, clinical examination and further investigation. If Ms Patel was investigated and shown to mammography were undertaken. Mammography carry the BRCA1 gene, the risk estimate for Ms Patel’s nieces indicated an area of microcalcification in the upper outer would be higher. quadrant of her left breast Before doctors introduce information to patients they should determine the way in which patients want to look for information, discover their level of knowledge on the subject, elicit any specific concerns they have, and find out the information that they need. Interactive health communication applications, such as decision support tools and websites, give Mother 62 doctors and patients additional ways to share understanding of Breast cancer patients’ reasons for consulting, and they can then work together to solve patients’ problems. The benefits to patients of using interactive health communication applications include a ? better understanding of their health problems, reduced Sister 51 Ms Patel Brother Sister 45 uncertainty, and the feeling that they are getting better support ? Cancer 48 52 Breast cancer from their carers. Many of these tools are new and unfamiliar to patients and doctors. The best way to use them to achieve better outcomes for patients during the time available in consultations remains Daughter Daughter 25 28 to be established. Research indicates that patients would like to be directed to a high quality interactive health communication A patient’s view of risk, presented as a three generation genogram application at diagnosis, and at any decision point thereafter (E Murray, personal communication, 2004). Access to images, audio, and animation The mammogram, like other clinical images, is available as hard Patient information copy or as an archived picture delivered to the desktop of any clinician authorised to view it. The image may be presented Patients need information to x Understand what is wrong with extra material to help explain the nature of the problem. x Gain a realistic idea of prognosis Archived images are more likely to be available than a film, and x Make the most of consultations serial display of archived copies allows comparison. x Understand the processes and likely outcomes of Many patients like explanation in the form of a diagram or tests and treatment in simple, often anatomical, terms. Some patients, however, x Help in self care prefer more detailed descriptions (for example, pathological x Learn about available services and sources of help explanations) of what is happening to their body. This x Provide reassurance and help information can be provided by clinicians on their computer x Help others understand screens, using digitised slide libraries, CD Roms, or material on x Legitimise their concerns and the need to seek websites. help x Learn how to prevent further illness x Identify further information and self help groups Multimedia information retrieval x Identify the best healthcare providers Large documents can be stored and transferred rapidly over electronic and optical fibre networks. These documents may include pictures, sound, video, or computer programs, such as 892 BMJ VOLUME 331 15 OCTOBER 2005 bmj.com
- 2. Clinical review simulators. Textbooks, journal articles, clinical guidelines, image libraries, and material designed for patient education are increasingly becoming available electronically. Discussing individual electronic health records and relevant reference material with patients is preferable to discussing general information about their problem. If Ms Patel and her surgeon are discussing whether she may need a lumpectomy or a simple mastectomy, then the ability to view a relevant image and brief text making the comparison will probably be more effective than a comprehensive treatise on all the possible procedures. In lumpectomy, the surgeon removes the In simple mastectomy, the surgeon breast cancer and some normal tissue removes the whole breast. Some lymph around it. Often, some of the lymph nodes under the arm may also be Risk prediction tools nodes under the arm are removed. removed. During the discussion of a potentially serious problem like Comparison of lumpectomy and mastectomy—simple diagrams with brief breast cancer, the issue of prognosis will probably arise. Until text can be effective in consultations. Adapted from http://medem.com/ recently prognostication has been largely implicit, and it was medlb/article_detaillb.cfm?article_ID=ZZZSOTZD38C&sub_cat=57 based on the clinical experience of similar patients with the same kind of problems and comorbidities. In a few cases (such as head injury or seriously ill patients in the intensive care unit) accurate, well calibrated clinical prediction rules like the Glasgow coma scale are available. Databases that contain information about patients with known characteristics are being developed, and this information is available across a range of specialties to augment clinicians’ experience with the type of problem they are dealing with. Problems with information retrieval during consultations Although much information is at hand, it is often difficult to find the most clinically relevant items. Studies measuring the use of information resources during consultations showed individual clinicians accessed the resources only a few times a month. To encourage clinicians to make more use of these information resources, other approaches to information retrieval during the encounter are being studied. x Email or telephone access to a human searcher—An example The Finprog study uses data on a large number of patients with breast is the ATTRACT question answering service for clinicians cancer to allow an individualised prediction of survival for a new patient by matching their disease profile to that of other patients whose outcomes are working in Wales known. From the website www.finprog.org x Human annotation—This approach uses links between relevant documents and a selected set of common queries that are manually assigned by a peer group (for example, by all the breast surgeons in Scotland or a group of radiologists in New Problems with real time searches during England) for mutual reference consultations x Case based reasoning—A generic approach to problem solving developed by researchers in the field of artificial x Time is spent composing and typing queries for each resource intelligence. Problems are solved by adapting new solutions to x Indexing vocabularies are designed by and for similar problems that have already been solved librarians and are inconsistent and non-intuitive x Automatic query construction—Information from an for clinicians electronic medical record is used to construct the query, x Search programs and their displays are designed partially or fully. Approaches include interactive user selection for research and educational purposes, not for of terms, automatic recognition of MeSH index terms in the use at the point of care x No provision for system initiative; that is, text of medical records, and developing generic queries that can clinicians can only find what they choose to look be filled in with terms from the record for. A relevant document may exist in the clinical x Search by navigation—In this approach it is possible to trials resource, but if the doctor thinks that search for information by traversing links between information finding a clinical trial is unlikely, then that items rather than constructing a query. Fixed links may be resource will not be searched organised in a hierarchical menu or as hypertext. Links may x Although many clinical situations occur often, it is also be created dynamically to reflect the changing needs of the difficult to reuse or share retrieval success x Managing and updating the information user. resources is an extra responsibility for the doctor Computers in a consultation The computer screen requires more attention than notes on paper, and clinicians spend less time interacting with the patient BMJ VOLUME 331 15 OCTOBER 2005 bmj.com 893
- 3. Clinical review when they use information resources during consultations. Further reading Despite this, doctors who use computers during their consultations are viewed favourably by patients. Research is x Emery J, Walton R, Coulson A, Glasspool D, Ziebland S, Fox J. A qualitative evaluation of computer support for recording and needed to investigate how additional electronic information interpreting family histories of breast and ovarian cancer in resources can be integrated into the consultation, given that a primary care (RAGs) using simulated cases. BMJ 1999;319:32-6 patient centred consultation style is desirable. x Murray E, Burns J, See-Tai S, Lai R, Nazareth I. Interactive Health Communication Applications for people with chronic disease. Cochrane Database Syst Rev 2004;(4):CD4274 After the consultation x Jones R, Pearson J, McGregor S, Cawsey AJ, Barret A, Craig N, et al. Randomised trial of personalised computer based information for It may be difficult, or impossible, to share understanding of all cancer patients. BMJ 1999;319:1241-7 important issues with a patient during the limited time available x Schmidt H.G. Norman GR, Boshuizen HPA. A cognitive in many clinical environments. Difficult, embarrassing, or perspective on medical expertise: theory and implications. Academic additional questions may occur to the patient after leaving the medicine 1990;65:611-21 x Jennett B, Teasdale G, Braakman R, Minderhoud J, Knill-Jones R. clinic. Written material (preprinted or produced during the Predicting outcome in ndividual patients after severe head injury. consultation), audiotapes of the consultation, or an email with Lancet 1976;1:1031-4 relevant website links for the patient may provide another x Hersh WR, Hickam DH. How well do physicians use electronic chance for them or their carers to revisit the issues or extend a information retrieval systems? A framework for investigation and line of inquiry that was partially dealt with in the consultation. systematic review. JAMA 1998;280:1347-52 x Brassey J, Elwyn G, Price C, Kinnersley P. Just in time information for clinicians: a questionnaire evaluation of the ATTRACT project. Summary BMJ 2001;322:529-30 x Ridsdale L, Hudd S. Computers in the consultation: the patient’s One of the most attractive features of integrating multimedia view. Br J Gen Pract 1994;44:367-9 information into the consultation is that the process educates x Dickinson D, Raynor DKT. Ask the patients—they may want to know more than you think. BMJ 2003;327:861 and empowers patient and doctor. Jointly, they retain control x Lundin J, Lundin M, Isola J, Joensuu H. A web-based system for over the conduct and conclusions of the encounter. In individualised survival estimation in breast cancer. BMJ particular, bringing information to the point of care allows the 2003;326:29 patient to participate in decision making, and encourages them to learn from the doctor’s expertise in interpreting and critically appraising information, rather than depending on the doctor’s memory and powers of recall. At present sources of relevant, well prepared, evidence based material are insufficient. Systematic reviews and other Frank Sullivan is NHS Tayside professor of research and development assessments of health technology could be amended to include in general practice and primary care, and Jeremy C Wyatt is professor of health informatics, University of Dundee. sections presenting information for patients on the choices of treatment that they have, with input from relevant patient groups. The series will be published as a book by Blackwell Publishing in spring 2006. Guidance from NICE (the National Institute for Health and Clinical Excellence) always includes a detailed information leaflet, Competing interests: None declared. but this can only be as evidence based as the available research BMJ 2005;331:892–4 allows. Some patients will prefer to discuss their problems during consultations with a doctor they trust, but audiovisual aids can help that process during and after the consultation. One hundred years ago Bedside books In a sermon preached in the Evangelical Church, Vienna, on the bedside book must not be heavy, either in the figurative or in the occasion of the death of Professor Nothnagel, Pastor Johanny literal sense.. . . When reading is deliberately used as a means of stated that when the famous physician was found dead in his bed wooing sleep, graver forms of literature may be chosen. On the a volume of Schiller’s poems was found beside him open at Das whole, we think poetry of the sublime order the best for the Ideal und das Leben. Probably most men, except such as go in purpose.. . . For reading during convalescence literature that terror of their wives, read in bed, but the custom is generally felt, cheers but not inebriates should be prescribed. Writers whose even by those who are its slaves, to require some excuse.. . . As a style like that of George Meredith puts a constant strain on the rule, Wilkie Collins and other masters of plot-weaving should be understanding of the reader, or like that of Mr Maurice Hewlett avoided, as likely to murder sleep; Richardson, of whom Johnson irritates by its artificial glitter, or like that of Marie Corelli annoys said that anyone who should read him for the story would hang by its frothy impertinence, are all alike contraindicated. Literature himself, is the great exemplar of bedside authors.. . . Our own of a kind that depresses the mind or fills it with gloom should be preference is for a writer whom long acquaintance has made so banished from the sick room. Ibsen, Zola, Maxim Gorki, and familiar that he can be dipped into at random with the certainty Dostoiewsky should therefore be left to persons of robust mental of finding something which is always better than one’s digestion who can sup full of literary horrors without suffering remembrance. Having reached the period of old fogeydom, Scott, from nightmare. For convalescents the best reading is that which Dickens, and Thackeray are our favourites. . . . Sterne is too jerky carries them out of themselves, and helps them to maintain a to be restful, and the greater classics must be approached with an healthy interest in life. earnestness of devotion which bed scarcely helps to foster. The (BMJ 1905;ii:200) 894 BMJ VOLUME 331 15 OCTOBER 2005 bmj.com