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Helping Patients Navigate the Web
You know they’re “researching” their conditions on their own. How can you guide your patients to accessible, accurate information on the Internet?

How often does this happen to you? You walk into an exam room and ask the patient what brings him in today, and the reply is something like, “Well, doc, I have stomach cancer.” You do a double-take and scan the patient’s chart, looking for test results or notes from a referring provider. Finding nothing, you ask the patient for more information on his diagnosis. To your surprise/dismay/frustration, he says, “Naw, I Googled my symptoms and that’s what I came up with.”

While you can’t control the Web-surfing your patients do before they present, you can influence their information-seeking behavior once you’ve delivered a diagnosis and/or treatment plan. You know they (and their family/caregivers) will have questions about the patient’s condition and how it can be managed for the long term. You hope they’ll come to you for answers. But since they are likely to use the resources at their fingertips, you at least want to ensure the information they receive is accurate and trustworthy.

With that in mind, we asked several Clinician Reviews board members to share the Web sites that they recommend to their patients. Some, including Cathy St. Pierre, PhD, APRN, FNP-BC, FAANP, and Ellen Mandel, DMH, MPA, PA-C, CDE, cited behemoths such as the Mayo Clinic Web site (www.mayoclinic.com/health-information), lauding it for being up to date, easy to access, and “clear and data-driven.” Other board members, as you’ll see below, suggested specialty-specific sites.

Freddi I. Segal-Gidan, PhD, PA, may speak for many clinicians when she explains, “We offer these [resources] to patients and families as part of health education, acknowledging that learning about someone’s condition is the first step to better understanding what they are experiencing and how this may change over time—since most of what we deal with are progressive, lengthy illnesses and chronic disease management.”

If you have reliable Web-based resources that you recommend to your patients, please visit us on Facebook (www.facebook.com/ClinRev) to share them!

Alzheimer’s Disease
ADEAR—Alzheimer’s Disease Education and Referral Center
www.nia.nih.gov/alzheimers

Who recommends it: Freddi I. Segal-Gidan, PA, PhD

Why: Operated by the NIH/National Institute on Aging specifically to provide consumers with current, accurate, state-of-the-art information about Alzheimer’s disease and dementing illness

Also recommended: Alzheimer’s Association (www.alz.org); Family Caregiver Alliance (www.caregiver.org); UCSF Memory Center for information on frontotemporal dementia (www.memory.ucsf.edu/ftd); Foundation for Health in Aging (www.healthinaging.org); Kaiser Family Foundation for information about Medicare, Medicaid, and health policy related to aging (www.kff.org)

Cardiology
Cardiac Arrhythmias Research and Education Foundation, Inc (CARE)
www.longqt.org

Who recommends it: Lyle W. Larson, PhD, PA-C

Why: Provides an overview of long QT syndrome (eg, management, genetics); includes links to a study registry for persons with implantable cardioverters-defibrillators who are participating in sports and a complete list of medications to avoid in this patient population. The information is collated and disseminated by health care experts in this field and is updated continuously as new data emerges.

Also recommended: CredibleMeds™ (www.crediblemeds.org)

Dermatology
American Academy of Dermatology: For the Public
www.aad.org/for-the-public

Who recommends it: Joe R. Monroe, MPAS, PA

Why: Provides patient information about a specific topic or diagnosis that is reliable, up to date, and in understandable language.

eMedicine
http://emedicine.medscape.com

Who recommends it: Joe R. Monroe, MPAS, PA

Why: The information is current and written by authoritative dermatologists or other relevant specialists. References are copious and relevant, and links in the text guide readers to equally good information on related topics.

Caveats: The only problem with eMedicine is that it’s jargon-heavy and meant only for those who are comfortable with the terminology. I reserve this suggestion for more medically erudite patients (eg, nurses or PAs).

Diabetes
DiabetesMine
www.diabetesmine.com/

Who recommends it: Christine Kessler, RN, MN, CNS, ANP, BC-ADM

Why: This is an award-winning blog by an individual with type 1 diabetes, but it has something for every diabetic patient and his/her family. Really awesome. I recommend it to my patients, and some of them blog for it!

Also recommended: American Diabetes Association (www.diabetes.org/)

Nephrology
American Association of Kidney Patients
www.aakp.org

Who recommends it: Jane S. Davis, DNP, CRNP

Why: Their information is written for and by kidney patients. It is for all patients with kidney disease, not just dialysis patients. They offer free publications that emphasize living with kidney disease; these pubs are attractive, with realistic information.

Kidney School
www.kidneyschool.org

Who recommends it: Jane S. Davis, DNP, CRNP

Why: This site offers about 16 modules, each on a different topic ranging from dialysis options to sexuality. It is for patients and allows them to pick the topic they want and view the module as often as they wish.

National Kidney Foundation
www.kidney.org

 

 

Who recommends it: Jane S. Davis, DNP, CRNP

Why: The patient section of this site contains recipes and health information. Patients can register for the Kidney Peers Program, in which they match up either as a mentor or a mentee with another kidney patient in the US. It covers the range from moderate kidney disease to kidney failure and transplant.

Also recommended: DaVita (www.davita.com); Fresenius Medical Care (www.ultracare-dialysis.com)

Orthopedics
OrthoInfo
orthoinfo.aaos.org/

Who recommends it: Mike Rudzinski, RPh, RPA-C

Why: Endorsed by the American Academy of Orthopedic Surgeons, this site offers patients information on the most common musculoskeletal conditions. Includes patient education materials with anatomic pictures and discussion. This is my “go to” site for these conditions; it offers an incredible, comprehensive overview of the condition, options for care including potential surgery, and what the patient can do to improve the condition. It is easy to use for the patient—they just click on the anatomic body part involved and a list of conditions comes up.

Rheumatology
American College of Rheumatology
www.rheumatology.org/Practice/Clinical/Patients/Information_for_Patients/

Who recommends it: Rick Pope, MPAS, PA-C, DFAAPA, CPAAPA

Why: Vetted by the American College of Rheumatologists, whose faculty is nationwide, altruistic, and collaborative, it is chock full of resources that are the standard of thinking and care for rheumatic conditions. It includes “scary” diagnoses such as lupus and rheumatoid arthritis, with short, patient-specific resources that can take the sting out of the perceived notions of these diseases. The information is available in Spanish and English. The Spanish information sheets can be provided to our Hispanic population and European populations that speak primarily Spanish. This is an awesome service for those of us on the East Coast and likely more helpful in parts of the country where Spanish is spoken more commonly.

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You know they’re “researching” their conditions on their own. How can you guide your patients to accessible, accurate information on the Internet?
You know they’re “researching” their conditions on their own. How can you guide your patients to accessible, accurate information on the Internet?

How often does this happen to you? You walk into an exam room and ask the patient what brings him in today, and the reply is something like, “Well, doc, I have stomach cancer.” You do a double-take and scan the patient’s chart, looking for test results or notes from a referring provider. Finding nothing, you ask the patient for more information on his diagnosis. To your surprise/dismay/frustration, he says, “Naw, I Googled my symptoms and that’s what I came up with.”

While you can’t control the Web-surfing your patients do before they present, you can influence their information-seeking behavior once you’ve delivered a diagnosis and/or treatment plan. You know they (and their family/caregivers) will have questions about the patient’s condition and how it can be managed for the long term. You hope they’ll come to you for answers. But since they are likely to use the resources at their fingertips, you at least want to ensure the information they receive is accurate and trustworthy.

With that in mind, we asked several Clinician Reviews board members to share the Web sites that they recommend to their patients. Some, including Cathy St. Pierre, PhD, APRN, FNP-BC, FAANP, and Ellen Mandel, DMH, MPA, PA-C, CDE, cited behemoths such as the Mayo Clinic Web site (www.mayoclinic.com/health-information), lauding it for being up to date, easy to access, and “clear and data-driven.” Other board members, as you’ll see below, suggested specialty-specific sites.

Freddi I. Segal-Gidan, PhD, PA, may speak for many clinicians when she explains, “We offer these [resources] to patients and families as part of health education, acknowledging that learning about someone’s condition is the first step to better understanding what they are experiencing and how this may change over time—since most of what we deal with are progressive, lengthy illnesses and chronic disease management.”

If you have reliable Web-based resources that you recommend to your patients, please visit us on Facebook (www.facebook.com/ClinRev) to share them!

Alzheimer’s Disease
ADEAR—Alzheimer’s Disease Education and Referral Center
www.nia.nih.gov/alzheimers

Who recommends it: Freddi I. Segal-Gidan, PA, PhD

Why: Operated by the NIH/National Institute on Aging specifically to provide consumers with current, accurate, state-of-the-art information about Alzheimer’s disease and dementing illness

Also recommended: Alzheimer’s Association (www.alz.org); Family Caregiver Alliance (www.caregiver.org); UCSF Memory Center for information on frontotemporal dementia (www.memory.ucsf.edu/ftd); Foundation for Health in Aging (www.healthinaging.org); Kaiser Family Foundation for information about Medicare, Medicaid, and health policy related to aging (www.kff.org)

Cardiology
Cardiac Arrhythmias Research and Education Foundation, Inc (CARE)
www.longqt.org

Who recommends it: Lyle W. Larson, PhD, PA-C

Why: Provides an overview of long QT syndrome (eg, management, genetics); includes links to a study registry for persons with implantable cardioverters-defibrillators who are participating in sports and a complete list of medications to avoid in this patient population. The information is collated and disseminated by health care experts in this field and is updated continuously as new data emerges.

Also recommended: CredibleMeds™ (www.crediblemeds.org)

Dermatology
American Academy of Dermatology: For the Public
www.aad.org/for-the-public

Who recommends it: Joe R. Monroe, MPAS, PA

Why: Provides patient information about a specific topic or diagnosis that is reliable, up to date, and in understandable language.

eMedicine
http://emedicine.medscape.com

Who recommends it: Joe R. Monroe, MPAS, PA

Why: The information is current and written by authoritative dermatologists or other relevant specialists. References are copious and relevant, and links in the text guide readers to equally good information on related topics.

Caveats: The only problem with eMedicine is that it’s jargon-heavy and meant only for those who are comfortable with the terminology. I reserve this suggestion for more medically erudite patients (eg, nurses or PAs).

Diabetes
DiabetesMine
www.diabetesmine.com/

Who recommends it: Christine Kessler, RN, MN, CNS, ANP, BC-ADM

Why: This is an award-winning blog by an individual with type 1 diabetes, but it has something for every diabetic patient and his/her family. Really awesome. I recommend it to my patients, and some of them blog for it!

Also recommended: American Diabetes Association (www.diabetes.org/)

Nephrology
American Association of Kidney Patients
www.aakp.org

Who recommends it: Jane S. Davis, DNP, CRNP

Why: Their information is written for and by kidney patients. It is for all patients with kidney disease, not just dialysis patients. They offer free publications that emphasize living with kidney disease; these pubs are attractive, with realistic information.

Kidney School
www.kidneyschool.org

Who recommends it: Jane S. Davis, DNP, CRNP

Why: This site offers about 16 modules, each on a different topic ranging from dialysis options to sexuality. It is for patients and allows them to pick the topic they want and view the module as often as they wish.

National Kidney Foundation
www.kidney.org

 

 

Who recommends it: Jane S. Davis, DNP, CRNP

Why: The patient section of this site contains recipes and health information. Patients can register for the Kidney Peers Program, in which they match up either as a mentor or a mentee with another kidney patient in the US. It covers the range from moderate kidney disease to kidney failure and transplant.

Also recommended: DaVita (www.davita.com); Fresenius Medical Care (www.ultracare-dialysis.com)

Orthopedics
OrthoInfo
orthoinfo.aaos.org/

Who recommends it: Mike Rudzinski, RPh, RPA-C

Why: Endorsed by the American Academy of Orthopedic Surgeons, this site offers patients information on the most common musculoskeletal conditions. Includes patient education materials with anatomic pictures and discussion. This is my “go to” site for these conditions; it offers an incredible, comprehensive overview of the condition, options for care including potential surgery, and what the patient can do to improve the condition. It is easy to use for the patient—they just click on the anatomic body part involved and a list of conditions comes up.

Rheumatology
American College of Rheumatology
www.rheumatology.org/Practice/Clinical/Patients/Information_for_Patients/

Who recommends it: Rick Pope, MPAS, PA-C, DFAAPA, CPAAPA

Why: Vetted by the American College of Rheumatologists, whose faculty is nationwide, altruistic, and collaborative, it is chock full of resources that are the standard of thinking and care for rheumatic conditions. It includes “scary” diagnoses such as lupus and rheumatoid arthritis, with short, patient-specific resources that can take the sting out of the perceived notions of these diseases. The information is available in Spanish and English. The Spanish information sheets can be provided to our Hispanic population and European populations that speak primarily Spanish. This is an awesome service for those of us on the East Coast and likely more helpful in parts of the country where Spanish is spoken more commonly.

How often does this happen to you? You walk into an exam room and ask the patient what brings him in today, and the reply is something like, “Well, doc, I have stomach cancer.” You do a double-take and scan the patient’s chart, looking for test results or notes from a referring provider. Finding nothing, you ask the patient for more information on his diagnosis. To your surprise/dismay/frustration, he says, “Naw, I Googled my symptoms and that’s what I came up with.”

While you can’t control the Web-surfing your patients do before they present, you can influence their information-seeking behavior once you’ve delivered a diagnosis and/or treatment plan. You know they (and their family/caregivers) will have questions about the patient’s condition and how it can be managed for the long term. You hope they’ll come to you for answers. But since they are likely to use the resources at their fingertips, you at least want to ensure the information they receive is accurate and trustworthy.

With that in mind, we asked several Clinician Reviews board members to share the Web sites that they recommend to their patients. Some, including Cathy St. Pierre, PhD, APRN, FNP-BC, FAANP, and Ellen Mandel, DMH, MPA, PA-C, CDE, cited behemoths such as the Mayo Clinic Web site (www.mayoclinic.com/health-information), lauding it for being up to date, easy to access, and “clear and data-driven.” Other board members, as you’ll see below, suggested specialty-specific sites.

Freddi I. Segal-Gidan, PhD, PA, may speak for many clinicians when she explains, “We offer these [resources] to patients and families as part of health education, acknowledging that learning about someone’s condition is the first step to better understanding what they are experiencing and how this may change over time—since most of what we deal with are progressive, lengthy illnesses and chronic disease management.”

If you have reliable Web-based resources that you recommend to your patients, please visit us on Facebook (www.facebook.com/ClinRev) to share them!

Alzheimer’s Disease
ADEAR—Alzheimer’s Disease Education and Referral Center
www.nia.nih.gov/alzheimers

Who recommends it: Freddi I. Segal-Gidan, PA, PhD

Why: Operated by the NIH/National Institute on Aging specifically to provide consumers with current, accurate, state-of-the-art information about Alzheimer’s disease and dementing illness

Also recommended: Alzheimer’s Association (www.alz.org); Family Caregiver Alliance (www.caregiver.org); UCSF Memory Center for information on frontotemporal dementia (www.memory.ucsf.edu/ftd); Foundation for Health in Aging (www.healthinaging.org); Kaiser Family Foundation for information about Medicare, Medicaid, and health policy related to aging (www.kff.org)

Cardiology
Cardiac Arrhythmias Research and Education Foundation, Inc (CARE)
www.longqt.org

Who recommends it: Lyle W. Larson, PhD, PA-C

Why: Provides an overview of long QT syndrome (eg, management, genetics); includes links to a study registry for persons with implantable cardioverters-defibrillators who are participating in sports and a complete list of medications to avoid in this patient population. The information is collated and disseminated by health care experts in this field and is updated continuously as new data emerges.

Also recommended: CredibleMeds™ (www.crediblemeds.org)

Dermatology
American Academy of Dermatology: For the Public
www.aad.org/for-the-public

Who recommends it: Joe R. Monroe, MPAS, PA

Why: Provides patient information about a specific topic or diagnosis that is reliable, up to date, and in understandable language.

eMedicine
http://emedicine.medscape.com

Who recommends it: Joe R. Monroe, MPAS, PA

Why: The information is current and written by authoritative dermatologists or other relevant specialists. References are copious and relevant, and links in the text guide readers to equally good information on related topics.

Caveats: The only problem with eMedicine is that it’s jargon-heavy and meant only for those who are comfortable with the terminology. I reserve this suggestion for more medically erudite patients (eg, nurses or PAs).

Diabetes
DiabetesMine
www.diabetesmine.com/

Who recommends it: Christine Kessler, RN, MN, CNS, ANP, BC-ADM

Why: This is an award-winning blog by an individual with type 1 diabetes, but it has something for every diabetic patient and his/her family. Really awesome. I recommend it to my patients, and some of them blog for it!

Also recommended: American Diabetes Association (www.diabetes.org/)

Nephrology
American Association of Kidney Patients
www.aakp.org

Who recommends it: Jane S. Davis, DNP, CRNP

Why: Their information is written for and by kidney patients. It is for all patients with kidney disease, not just dialysis patients. They offer free publications that emphasize living with kidney disease; these pubs are attractive, with realistic information.

Kidney School
www.kidneyschool.org

Who recommends it: Jane S. Davis, DNP, CRNP

Why: This site offers about 16 modules, each on a different topic ranging from dialysis options to sexuality. It is for patients and allows them to pick the topic they want and view the module as often as they wish.

National Kidney Foundation
www.kidney.org

 

 

Who recommends it: Jane S. Davis, DNP, CRNP

Why: The patient section of this site contains recipes and health information. Patients can register for the Kidney Peers Program, in which they match up either as a mentor or a mentee with another kidney patient in the US. It covers the range from moderate kidney disease to kidney failure and transplant.

Also recommended: DaVita (www.davita.com); Fresenius Medical Care (www.ultracare-dialysis.com)

Orthopedics
OrthoInfo
orthoinfo.aaos.org/

Who recommends it: Mike Rudzinski, RPh, RPA-C

Why: Endorsed by the American Academy of Orthopedic Surgeons, this site offers patients information on the most common musculoskeletal conditions. Includes patient education materials with anatomic pictures and discussion. This is my “go to” site for these conditions; it offers an incredible, comprehensive overview of the condition, options for care including potential surgery, and what the patient can do to improve the condition. It is easy to use for the patient—they just click on the anatomic body part involved and a list of conditions comes up.

Rheumatology
American College of Rheumatology
www.rheumatology.org/Practice/Clinical/Patients/Information_for_Patients/

Who recommends it: Rick Pope, MPAS, PA-C, DFAAPA, CPAAPA

Why: Vetted by the American College of Rheumatologists, whose faculty is nationwide, altruistic, and collaborative, it is chock full of resources that are the standard of thinking and care for rheumatic conditions. It includes “scary” diagnoses such as lupus and rheumatoid arthritis, with short, patient-specific resources that can take the sting out of the perceived notions of these diseases. The information is available in Spanish and English. The Spanish information sheets can be provided to our Hispanic population and European populations that speak primarily Spanish. This is an awesome service for those of us on the East Coast and likely more helpful in parts of the country where Spanish is spoken more commonly.

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Helping Patients Navigate the Web
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Helping Patients Navigate the Web
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