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http://www.100md.com
《英国医生杂志》
University of Dundee.
Introduction
People with health concerns no longer have to become patients by consulting a health professional. Electronic health (eHealth) tools provide access to many resources that may satisfy their requirements. This article describes ways that patients can investigate health issues before, or instead of, a consultation.
Ms Amulya Patel is a 48 year old accountant whose mother has recently been diagnosed with breast cancer. Ms Patel wonders about her own level of risk, and uses the internet to search for patient resources
As a professional, Ms Patel (see box opposite) can access health resources on the internet at work and at home. She may subscribe to a mobile internet service provider through her telephone or palmtop computer. Internet access is not restricted to affluent people in western societies. In the United Kingdom, the 2003 national statistics omnibus survey showed that 48% of households have home internet access, and the figures from the United States are even higher (60% of households have access). Internet cafes can be found worldwide, and library services often provide time online for free. The public can pay for "push technologies" from publishers that supply health alerts, but most people search for the information they need.
Google search results for"breast cancer and family"
Using a search engine
Internet search engines are software tools that index and catalogue websites. People with little or no prior knowledge of a subject, but with some experience of searching the internet, often use search engines to begin an inquiry.
If Ms Patel types "breast cancer and family" into a search engine (such as Google), in 0.23 seconds she may be overwhelmed by more than 5 million websites dealing with the topic. She will be helped by the fact that the search engine has sorted each "hit" by the number of other websites to which it is linked. The list is ordered, and so Ms Patel can start near the top of the list by reading the brief descriptions, or she may use "advanced search" options to narrow the initial search. Advanced searches allow specific phrases, languages, and times to be defined. This reduces the hits to a more manageable number. The most popular sites will probably be those whose content matches patients' preferences for appearance, or those that contain the information patients' are looking for. The most popular sites do not necessarily have features that are the markers of quality preferred by health professionals. If the site does not answer patients' questions, it may provide links to other sites that can. Alternatively, patients can return to the search list and start again.
An example of a Google hit—sites chosen by patients usually have immediate facts, such as women have a one in eight lifetime risk of developing cancer
Patient orientated health portals
These are specalised search engines with additional features such as access to frequently asked questions about health or email facilities. Individual clinicians, clinics, practices, hospitals, and health maintenance organisations provide portals to their own and other resources.
National and local health services (for example, the NHS in the UK) often provide access to such resources for patients. These portals may link to specific services provided by that health service, such as lists of local cancer genetics clinics.
NHS Direct is a health portal aimed at the public
Other portals are provided by independent bodies. Many have international links and are funded by charities. They vary in quality. Some are quality assured, and when they are not, tools are available to allow patients to assess the portal.
Patients make sophisticated use of multiple sources of information. In one study, half of the users of the database of patient experience (DIPEX) who were interested in breast cancer accessed internet resources to obtain second opinions on a range of problems. They sought support and information from patients who had similar issues, obtained information about tests and interventions, and identified questions to ask doctors if necessary.
DIPEX allows patients (like Ms Patel) to read, listen, or watch patients facing similar problems to their own
Direct access to medical literature
Some health portals link directly to websites that present medical literature intended for professional use. Patients like those in Ms Patel's situation may have gone straight to such resources because they have heard that they will probably contain the information they are seeking. Ms Patel could access primary data sources, such as the BMJ or the Journal of Medical Genetics, directly. Sometimes journals provide free access to all their content, others make only article s or brief summaries available.
A relevant health service resource accessed through a portal
Two examples of quality assured portals
Most patients will have difficulty in interpreting medical journals (as is the case for many doctors). Risk may be described in absolute or relative terms as percentages, rates, multiples, and over different time periods. Because of the complex nature of the articles and papers in medical journals, many people prefer professional help to translate the information that they have found.
Many portals link to other websites, and they may direct the person to other resources such as books, multimedia resources, or patient support groups
Mediated access to medical literature
Several journals have patient orientated summaries that highlight one of their recent scientific papers in a broader context and translate the content into a more readable format. The New England Journal of Medicine and JAMA are notable in this regard, although subscriptions are needed to access many of these services. Therefore, they may be available only if accessed by the health professional on the patient's behalf.
Patient summaries in journals can be helpful
Some clinics make questionnaires and guidelines available on their website, but people can find them difficult to interpret. The questionnaire opposite prompts Ms Patel to ask her relatives about the causes of death of other members of her family. She finds that, in addition to her mother, two maternal aunts had breast cancer.
Examples of familial breast cancer management guidelines
Teleconsultation
If the person finds an electronic resource that covers their query, then no consultation may be needed. Often, however, general information will need to be supplemented by knowledge of a person's situation. Ms Patel may email her general practitioner or follow a website link to a specialist in the genetics of familial breast cancer. The advantages of email include asynchronous interaction (patients and doctors can submit and receive responses at their convenience), easy exchange of follow-up information, patient education (by attaching leaflets or links to websites), and automatic documentation of consulting behaviour or service requests. Regulation of teleconsultation varies between countries, and guidelines are available. Security and confidentiality issues must be overcome, and there is increasing pressure to do so. Biometric methods, such as logging in using fingerprints or voice recognition, may be a solution in the medium term. Webcams or other video messaging techniques allow real time, albeit virtual, face to face consultations. To provide teleconferencing, doctors may have to alter their daily schedules.
Further reading
Jargon may make the information resource impenetrable to non-professionals, and some professionals
Summary
Before seeing a doctor, Ms Patel found useful information about familial breast cancer. The information prompted her to ask questions of her family, and she found a strong familial history of breast cancer. She sought professional advice. A computer literate person who wants to find out about a health issue may find a satisfactory answer online, but those who become patients will probably need the expertise from doctors that they trust to interpret data for them.
Risk assessment sheet obtained from the internet
This is the second in a series of 12 articles A glossary of terms is available at http://bmj.com/cgi/content/full/331/7516/566/DC1A
The series will be published as a book by Blackwell Publishing in spring 2006.
Competing interests: None declared.
Related Articles
How computers can help to share understanding with patients
Frank Sullivan and Jeremy C Wyatt
BMJ 2005 331: 892-894.
How the internet affects patients' experience of cancer: a qualitative study
Sue Ziebland, Alison Chapple, Carol Dumelow, Julie Evans, Suman Prinjha, and Linda Rozmovits
BMJ 2004 328: 564.
Integrating service development with evaluation in telehealthcare: an ethnographic study
Tracy Finch, Carl May, Frances Mair, Maggie Mort, and Linda Gask
BMJ 2003 327: 1205-1209.
Examination of instruments used to rate quality of health information on the internet: chronicle of a voyage with an unclear destination
Anna Gagliardi and Alejandro R Jadad
BMJ 2002 324: 569-573.
Breast cancer on the world wide web: cross sectional survey of quality of information and popularity of websites
Funda Meric, Elmer V Bernstam, Nadeem Q Mirza, Kelly K Hunt, Frederick C Ames, Merrick I Ross, Henry M Kuerer, Raphael E Pollock, Mark A Musen, and S Eva Singletary
BMJ 2002 324: 577-581.(Frank Sullivan, NHS Tayside professor of)
Introduction
People with health concerns no longer have to become patients by consulting a health professional. Electronic health (eHealth) tools provide access to many resources that may satisfy their requirements. This article describes ways that patients can investigate health issues before, or instead of, a consultation.
Ms Amulya Patel is a 48 year old accountant whose mother has recently been diagnosed with breast cancer. Ms Patel wonders about her own level of risk, and uses the internet to search for patient resources
As a professional, Ms Patel (see box opposite) can access health resources on the internet at work and at home. She may subscribe to a mobile internet service provider through her telephone or palmtop computer. Internet access is not restricted to affluent people in western societies. In the United Kingdom, the 2003 national statistics omnibus survey showed that 48% of households have home internet access, and the figures from the United States are even higher (60% of households have access). Internet cafes can be found worldwide, and library services often provide time online for free. The public can pay for "push technologies" from publishers that supply health alerts, but most people search for the information they need.
Google search results for"breast cancer and family"
Using a search engine
Internet search engines are software tools that index and catalogue websites. People with little or no prior knowledge of a subject, but with some experience of searching the internet, often use search engines to begin an inquiry.
If Ms Patel types "breast cancer and family" into a search engine (such as Google), in 0.23 seconds she may be overwhelmed by more than 5 million websites dealing with the topic. She will be helped by the fact that the search engine has sorted each "hit" by the number of other websites to which it is linked. The list is ordered, and so Ms Patel can start near the top of the list by reading the brief descriptions, or she may use "advanced search" options to narrow the initial search. Advanced searches allow specific phrases, languages, and times to be defined. This reduces the hits to a more manageable number. The most popular sites will probably be those whose content matches patients' preferences for appearance, or those that contain the information patients' are looking for. The most popular sites do not necessarily have features that are the markers of quality preferred by health professionals. If the site does not answer patients' questions, it may provide links to other sites that can. Alternatively, patients can return to the search list and start again.
An example of a Google hit—sites chosen by patients usually have immediate facts, such as women have a one in eight lifetime risk of developing cancer
Patient orientated health portals
These are specalised search engines with additional features such as access to frequently asked questions about health or email facilities. Individual clinicians, clinics, practices, hospitals, and health maintenance organisations provide portals to their own and other resources.
National and local health services (for example, the NHS in the UK) often provide access to such resources for patients. These portals may link to specific services provided by that health service, such as lists of local cancer genetics clinics.
NHS Direct is a health portal aimed at the public
Other portals are provided by independent bodies. Many have international links and are funded by charities. They vary in quality. Some are quality assured, and when they are not, tools are available to allow patients to assess the portal.
Patients make sophisticated use of multiple sources of information. In one study, half of the users of the database of patient experience (DIPEX) who were interested in breast cancer accessed internet resources to obtain second opinions on a range of problems. They sought support and information from patients who had similar issues, obtained information about tests and interventions, and identified questions to ask doctors if necessary.
DIPEX allows patients (like Ms Patel) to read, listen, or watch patients facing similar problems to their own
Direct access to medical literature
Some health portals link directly to websites that present medical literature intended for professional use. Patients like those in Ms Patel's situation may have gone straight to such resources because they have heard that they will probably contain the information they are seeking. Ms Patel could access primary data sources, such as the BMJ or the Journal of Medical Genetics, directly. Sometimes journals provide free access to all their content, others make only article s or brief summaries available.
A relevant health service resource accessed through a portal
Two examples of quality assured portals
Most patients will have difficulty in interpreting medical journals (as is the case for many doctors). Risk may be described in absolute or relative terms as percentages, rates, multiples, and over different time periods. Because of the complex nature of the articles and papers in medical journals, many people prefer professional help to translate the information that they have found.
Many portals link to other websites, and they may direct the person to other resources such as books, multimedia resources, or patient support groups
Mediated access to medical literature
Several journals have patient orientated summaries that highlight one of their recent scientific papers in a broader context and translate the content into a more readable format. The New England Journal of Medicine and JAMA are notable in this regard, although subscriptions are needed to access many of these services. Therefore, they may be available only if accessed by the health professional on the patient's behalf.
Patient summaries in journals can be helpful
Some clinics make questionnaires and guidelines available on their website, but people can find them difficult to interpret. The questionnaire opposite prompts Ms Patel to ask her relatives about the causes of death of other members of her family. She finds that, in addition to her mother, two maternal aunts had breast cancer.
Examples of familial breast cancer management guidelines
Teleconsultation
If the person finds an electronic resource that covers their query, then no consultation may be needed. Often, however, general information will need to be supplemented by knowledge of a person's situation. Ms Patel may email her general practitioner or follow a website link to a specialist in the genetics of familial breast cancer. The advantages of email include asynchronous interaction (patients and doctors can submit and receive responses at their convenience), easy exchange of follow-up information, patient education (by attaching leaflets or links to websites), and automatic documentation of consulting behaviour or service requests. Regulation of teleconsultation varies between countries, and guidelines are available. Security and confidentiality issues must be overcome, and there is increasing pressure to do so. Biometric methods, such as logging in using fingerprints or voice recognition, may be a solution in the medium term. Webcams or other video messaging techniques allow real time, albeit virtual, face to face consultations. To provide teleconferencing, doctors may have to alter their daily schedules.
Further reading
Jargon may make the information resource impenetrable to non-professionals, and some professionals
Summary
Before seeing a doctor, Ms Patel found useful information about familial breast cancer. The information prompted her to ask questions of her family, and she found a strong familial history of breast cancer. She sought professional advice. A computer literate person who wants to find out about a health issue may find a satisfactory answer online, but those who become patients will probably need the expertise from doctors that they trust to interpret data for them.
Risk assessment sheet obtained from the internet
This is the second in a series of 12 articles A glossary of terms is available at http://bmj.com/cgi/content/full/331/7516/566/DC1A
The series will be published as a book by Blackwell Publishing in spring 2006.
Competing interests: None declared.
Related Articles
How computers can help to share understanding with patients
Frank Sullivan and Jeremy C Wyatt
BMJ 2005 331: 892-894.
How the internet affects patients' experience of cancer: a qualitative study
Sue Ziebland, Alison Chapple, Carol Dumelow, Julie Evans, Suman Prinjha, and Linda Rozmovits
BMJ 2004 328: 564.
Integrating service development with evaluation in telehealthcare: an ethnographic study
Tracy Finch, Carl May, Frances Mair, Maggie Mort, and Linda Gask
BMJ 2003 327: 1205-1209.
Examination of instruments used to rate quality of health information on the internet: chronicle of a voyage with an unclear destination
Anna Gagliardi and Alejandro R Jadad
BMJ 2002 324: 569-573.
Breast cancer on the world wide web: cross sectional survey of quality of information and popularity of websites
Funda Meric, Elmer V Bernstam, Nadeem Q Mirza, Kelly K Hunt, Frederick C Ames, Merrick I Ross, Henry M Kuerer, Raphael E Pollock, Mark A Musen, and S Eva Singletary
BMJ 2002 324: 577-581.(Frank Sullivan, NHS Tayside professor of)