David Baxter PhD
Late Founder
Online health information sources: the changing face of medicine
by Bernice De Braal, Information World Review
05 Dec 2008
Does the swelling cabinet of online remedies threaten the career health of information professionals?
The public has never had so many choices of health service provider. The NHS Patient Choice programme has given a wide range of places that patients can go to for treatment. Since April 2008, a patient can choose to be treated at any NHS-approved provider in England as long as it meets Healthcare Commission standards.
Complementing the expansion of patient choice, online information resources from the NHS, health charities and other providers are offering the public an ever increasing range of patient information.
But how does the expansion of free online health information sources affect health and public libraries? There appears to be a consensus among information professionals that these developments should not be regarded as a challenge or threat to traditional information skills: Pamela Tulloch, chair of CILIP?s Public Libraries Group, says: ?The traditional book and leaflet format has increasingly been replaced by electronic information sources.
?Public librarians are embracing this change and have developed initiatives with health colleagues, such as books on prescription, health information surgeries and group activities which promote better health, such as book groups, tours and reminiscence initiatives.?
Fabienne Michaud of the Royal Society of Medicine Library echoes this sentiment: ?I do not see these resources as a threat to our role as information professionals but as another type of information to digest, organise and share with our users via a web page, a workshop or the enquiry desk. It is also a good way for us to keep up to date in this subject area.
?My only concern about patient information on the web would be the authority of the source. I would not feel comfortable using a support group website or a blog created by a cancer patient, for instance, unless it was backed up by a reputable organisation such as the NHS or Depart*ment of Health. I guess that this is another area where librarians can help: in making users aware of the pitfalls of using ?unofficial? web sources and in teaching them how to evaluate what they find on the internet.?
So what are the leading patient information sources and what do they offer?
1. Treatment choice
NHS Choices" is the new official NHS website. It aims to ?put you in control of your healthcare? by offering information and help with finding, choosing and using NHS services. Topics include waiting times, hospital ratings and cleanliness. It houses a health encyclopedia, local services search facility, and a Compare Hospitals area that compares hospitals by criteria varying from treatments offered and availability of Accident and Emergency departments, to car parking facilities.
Patient Choice is an independent organisation working to enable people in England to access better healthcare. The site is designed to help people find the best sources of healthcare and treatment information online and to provide the information necessary to empower them in their conversations with health professionals. It aims to ?navigate you through the NHS Patient Choice programme and the healthcare options available today?.
2. Health encyclopedias
There are many free health and medical directories and encyclopedias online, from commercial and not-for-profit sources. Popular sources include BBC Health, and NHS Direct and Children First for Health.
The BBC Health and Conditions index houses disease summaries and lists of organisations offering health and emotional support. It has in-depth guides for common problems such as cancer and allergies.
The New Media Awards 2007 nominee Children First for Health is a comprehensive resource for children, young people and parents, tackling a wide range of issues including common health worries, chronic illness and staying in hospital. It has factsheets, professional responses to questions, news, features, case studies, a sound-enhanced dictionary, video diaries and games. The site content is verified by Great Ormond Street Hospital.
Regarded as a safe choice by information professionals and the public alike, NHS Direct is regularly checked by senior health professionals. An email service is available for non-urgent health enquiries. The bilingual NHS Direct Wales was relaunched last year, offering a new health encyclopedia with over 650 topics.
Commercial favourites with the public include Bupa, Netdoctor, and Patient UK.
Those concerned about incorrect diagnoses can consult Wrong Diagnosis, a US directory of medical errors. It lists common mistakes relating to over 10,000 diseases and 3,000 symptoms. There is a searchable database of common errors and an alphabetical disease list detailing possible symptoms.
3. Patient feedback
Winner of the 2008 New Media Community Activism Award, Patient Opinion allows users to comment on care and see how others have been treated. The resource was created by Sheffield GP Dr Paul Hodgkin, who wanted to encourage patient feedback and give NHS trusts an insight into patients? perceptions of service delivery.
A not-for-profit social enterprise, Patient Opinion lets patients and carers find out what other people think of local hospitals, hospices and mental health services, and to share their experiences. With almost 10,000 stories already contributed, it serves 20,000 pages daily.
Users can find local healthcare services via a postcode search, and opinions using a keyword search. The site pledges to send postings to the relevant manager, giving them the chance to improve services in response to feedback.
The site is now 100% supported by subscriptions from the NHS and other organisations. In return for subscribing, each staff member receives email alerts about their department whenever relevant feedback is captured. Latest developments include a pilot of feedback from homeless people, adding mental health trusts to the feedback options, and finalising coverage of Scotland.
According to James Munro, Patient Opinion?s director of research, the site?s appeal lies in its accessibility and inclusiveness: ?The great thing about the web is that all voices count equally: everyone gets an equal say. The web allows people to have a voice at essentially zero cost. Traditionally, people didn?t complain because they were frightened of repercussions and thought it was pointless.?
Patients can report any suspected side effects of medications taken to the Medicines and Healthcare products Regulatory Agency (MHRA) by registering with the Yellow Card scheme.
4. Clinical information
In-depth clinical and evidence-based information is accessible to the public within several websites.
The government?s watchdog on medical treatments, the National Institute for Clinical Excellence (NICE), publishes in-depth guidance and information on the current recommended treatment guidelines for a wide range of health issues.
Published by the British Medical Journal (BMJ), BMJ Best Treatments tells users about available treatments and how they work, based on clinical evidence. It promises to ?tell you which treatments really work and which don?t work, based on the best and most up-to-date medical research?. However, there is a charge: 30 days? access costs ?9.99, while single topics carry a pay-per-view charge of ?3.
The National Library for Health (NLH) strives to be ?the best, most trusted health-related knowledge service in the world?. Aimed at NHS staff and patients, the public can access most content. Resources include evidence-based reviews, patient sites selected by NHS Direct, drugs information, an images library and a selection of specialist libraries, journals and health databases.
5. Charity websites
For those seeking information about a particular health issue, charities offer a vast array of online resources. A staggering 23,459 health, medical and sickness charities in England and Wales are registered with the Charity Commission, and many offer health information online.
CancerHelp UK is a free information service for cancer sufferers and their families, from Cancer Research UK. It aims to make information about cancer ?freely available to all and written in a way that people can easily understand?. Topics include coping with the disease, specific cancers, p revention, diagnosis, treatment and follow-up, and complementary and alternative therapies. Users can browse clinical trials information by cancer type and participate in the a Cancer Chat discussion forum. Its impact has been acknowledged by the 2007 Website of the Year Awards, where it was voted the Most Popular Mind and Body Site.
Mind offers a comprehensive range of free, regularly updated factsheets and booklets covering all aspects of mental health and well-being, from legal briefings to conditions and drugs guides. Audio and text trans*lations are also provided in a variety of languages.
Help the Aged also produces a broad selection of free leaflets on topics relating to the health and well-being of the elderly, from health conditions to living equipment options, bereavement and sheltered housing information.
Diabetes UK contains information and advice on living with diabetes, treatment and care options, diabetes complications and case studies from young people and adults. There are also plenty of free resources aimed at professionals, such as care planning advice and prevalence statistics.
by Bernice De Braal, Information World Review
05 Dec 2008
Does the swelling cabinet of online remedies threaten the career health of information professionals?
The public has never had so many choices of health service provider. The NHS Patient Choice programme has given a wide range of places that patients can go to for treatment. Since April 2008, a patient can choose to be treated at any NHS-approved provider in England as long as it meets Healthcare Commission standards.
Complementing the expansion of patient choice, online information resources from the NHS, health charities and other providers are offering the public an ever increasing range of patient information.
But how does the expansion of free online health information sources affect health and public libraries? There appears to be a consensus among information professionals that these developments should not be regarded as a challenge or threat to traditional information skills: Pamela Tulloch, chair of CILIP?s Public Libraries Group, says: ?The traditional book and leaflet format has increasingly been replaced by electronic information sources.
?Public librarians are embracing this change and have developed initiatives with health colleagues, such as books on prescription, health information surgeries and group activities which promote better health, such as book groups, tours and reminiscence initiatives.?
Fabienne Michaud of the Royal Society of Medicine Library echoes this sentiment: ?I do not see these resources as a threat to our role as information professionals but as another type of information to digest, organise and share with our users via a web page, a workshop or the enquiry desk. It is also a good way for us to keep up to date in this subject area.
?My only concern about patient information on the web would be the authority of the source. I would not feel comfortable using a support group website or a blog created by a cancer patient, for instance, unless it was backed up by a reputable organisation such as the NHS or Depart*ment of Health. I guess that this is another area where librarians can help: in making users aware of the pitfalls of using ?unofficial? web sources and in teaching them how to evaluate what they find on the internet.?
So what are the leading patient information sources and what do they offer?
1. Treatment choice
NHS Choices" is the new official NHS website. It aims to ?put you in control of your healthcare? by offering information and help with finding, choosing and using NHS services. Topics include waiting times, hospital ratings and cleanliness. It houses a health encyclopedia, local services search facility, and a Compare Hospitals area that compares hospitals by criteria varying from treatments offered and availability of Accident and Emergency departments, to car parking facilities.
Patient Choice is an independent organisation working to enable people in England to access better healthcare. The site is designed to help people find the best sources of healthcare and treatment information online and to provide the information necessary to empower them in their conversations with health professionals. It aims to ?navigate you through the NHS Patient Choice programme and the healthcare options available today?.
2. Health encyclopedias
There are many free health and medical directories and encyclopedias online, from commercial and not-for-profit sources. Popular sources include BBC Health, and NHS Direct and Children First for Health.
The BBC Health and Conditions index houses disease summaries and lists of organisations offering health and emotional support. It has in-depth guides for common problems such as cancer and allergies.
The New Media Awards 2007 nominee Children First for Health is a comprehensive resource for children, young people and parents, tackling a wide range of issues including common health worries, chronic illness and staying in hospital. It has factsheets, professional responses to questions, news, features, case studies, a sound-enhanced dictionary, video diaries and games. The site content is verified by Great Ormond Street Hospital.
Regarded as a safe choice by information professionals and the public alike, NHS Direct is regularly checked by senior health professionals. An email service is available for non-urgent health enquiries. The bilingual NHS Direct Wales was relaunched last year, offering a new health encyclopedia with over 650 topics.
Commercial favourites with the public include Bupa, Netdoctor, and Patient UK.
Those concerned about incorrect diagnoses can consult Wrong Diagnosis, a US directory of medical errors. It lists common mistakes relating to over 10,000 diseases and 3,000 symptoms. There is a searchable database of common errors and an alphabetical disease list detailing possible symptoms.
3. Patient feedback
Winner of the 2008 New Media Community Activism Award, Patient Opinion allows users to comment on care and see how others have been treated. The resource was created by Sheffield GP Dr Paul Hodgkin, who wanted to encourage patient feedback and give NHS trusts an insight into patients? perceptions of service delivery.
A not-for-profit social enterprise, Patient Opinion lets patients and carers find out what other people think of local hospitals, hospices and mental health services, and to share their experiences. With almost 10,000 stories already contributed, it serves 20,000 pages daily.
Users can find local healthcare services via a postcode search, and opinions using a keyword search. The site pledges to send postings to the relevant manager, giving them the chance to improve services in response to feedback.
The site is now 100% supported by subscriptions from the NHS and other organisations. In return for subscribing, each staff member receives email alerts about their department whenever relevant feedback is captured. Latest developments include a pilot of feedback from homeless people, adding mental health trusts to the feedback options, and finalising coverage of Scotland.
According to James Munro, Patient Opinion?s director of research, the site?s appeal lies in its accessibility and inclusiveness: ?The great thing about the web is that all voices count equally: everyone gets an equal say. The web allows people to have a voice at essentially zero cost. Traditionally, people didn?t complain because they were frightened of repercussions and thought it was pointless.?
Patients can report any suspected side effects of medications taken to the Medicines and Healthcare products Regulatory Agency (MHRA) by registering with the Yellow Card scheme.
4. Clinical information
In-depth clinical and evidence-based information is accessible to the public within several websites.
The government?s watchdog on medical treatments, the National Institute for Clinical Excellence (NICE), publishes in-depth guidance and information on the current recommended treatment guidelines for a wide range of health issues.
Published by the British Medical Journal (BMJ), BMJ Best Treatments tells users about available treatments and how they work, based on clinical evidence. It promises to ?tell you which treatments really work and which don?t work, based on the best and most up-to-date medical research?. However, there is a charge: 30 days? access costs ?9.99, while single topics carry a pay-per-view charge of ?3.
The National Library for Health (NLH) strives to be ?the best, most trusted health-related knowledge service in the world?. Aimed at NHS staff and patients, the public can access most content. Resources include evidence-based reviews, patient sites selected by NHS Direct, drugs information, an images library and a selection of specialist libraries, journals and health databases.
5. Charity websites
For those seeking information about a particular health issue, charities offer a vast array of online resources. A staggering 23,459 health, medical and sickness charities in England and Wales are registered with the Charity Commission, and many offer health information online.
CancerHelp UK is a free information service for cancer sufferers and their families, from Cancer Research UK. It aims to make information about cancer ?freely available to all and written in a way that people can easily understand?. Topics include coping with the disease, specific cancers, p revention, diagnosis, treatment and follow-up, and complementary and alternative therapies. Users can browse clinical trials information by cancer type and participate in the a Cancer Chat discussion forum. Its impact has been acknowledged by the 2007 Website of the Year Awards, where it was voted the Most Popular Mind and Body Site.
Mind offers a comprehensive range of free, regularly updated factsheets and booklets covering all aspects of mental health and well-being, from legal briefings to conditions and drugs guides. Audio and text trans*lations are also provided in a variety of languages.
Help the Aged also produces a broad selection of free leaflets on topics relating to the health and well-being of the elderly, from health conditions to living equipment options, bereavement and sheltered housing information.
Diabetes UK contains information and advice on living with diabetes, treatment and care options, diabetes complications and case studies from young people and adults. There are also plenty of free resources aimed at professionals, such as care planning advice and prevalence statistics.
Last edited by a moderator:
