Informatics Interest Group

1. Authoritative – indicates the qualifications of the authors, either in the description of the app/RPM device, or within the website.

2. Usability – Can a new user quickly learn to use the system? Attractive and effective GUI?

3. Complementary –information should support, not replace, the provider-patient relationship

4. Privacy & Security – respect the privacy & confidentiality of personal data submitted to the site/app/Remote Patient Monitoring  (RPM) device by the visitor/end user. Meets HIPAA regulations if data transmission is involved for the exchange of information. Can caregivers be granted permissions to view patient progress? Is there a BAA (business associates agreement) for devices/apps/web portals that store patient information for providers to review (not view on the patient’s device)?

5. Attribution – cites the source(s) of published information, date medical and health pages

6. Maintainability – is the site/app/RPM modified in a timely manner when new evidence-based practices are published? If a medical app/site/RPM device includes medications, are new medications added to the database in a timely manner?

7. Availability – is the app/site available at all times? Are there downtimes (planned or otherwise), and if so, will there be notification to end-users? Is there a fee/subscription to join website/app/RPM? Is this fee cost-prohibitive for the population targeted?

8. Portability –on which OS’s and which browsers does the program run? Can the data be migrated to other systems?

9. Justifiability – site must back up any claims relating to benefits & performance. Are there any claims based on the site/app? Is there a disclaimer?

10. Transparency – accessible presentation, accurate email contact & company information.

11. Financial disclosure – identifies funding sources.

12. Advertising policy – clearly distinguishes advertising from editorial/educational content.

13. Monitoring – is the site clear in who is monitoring or answering patients questions or overseeing discussions. The networking site may offer a direct communication line to a healthcare provider to address medical issues.

14. Readability– The website must be at an 8^th grade level or lower

Note: Adapted from Health on the Net Foundation. The HON Code of Conduct for medical and health Web sites (HONcode). Retrieved from: https://www.hon.ch/en/certification.html

Atrial Fibrillation

https://supportnetwork.heart.org/connect-with-people-like-me/heart/afib/newly-diagnosed/

https://supportnetwork.heart.org/

Asthma:

http://www.lung.org/lung-health-and-diseases/lung-disease-lookup/asthma/

https://www.inspire.com/groups/living-with-asthma/

Cancer:

https://www.cancer.org/treatment/support-programs-and-services/online-communities.html

https://csn.cancer.org/forum

Cancer Survivors:

http://www.lung.org/lung-health-and-diseases/lung-disease-lookup/lung-cancer/

Endorsed the following:

https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/

COPD

http://www.lung.org/lung-health-and-diseases/lung-disease-lookup/copd/

Endorsed the following:

https://www.inspire.com/groups/american-lung-association-copd/?utm_&utm_medium=Landing%20Page&utm_term=COPD&utm_content=iFrame&utm_campaign=ALA-iFrame-COPD&ga=freshen

Diabetes

https://community.diabetes.org/home

Graves Disease

https://www.gdatf.org/community/find-a-support-group

Heart Disease

https://supportnetwork.heart.org/

Lung Disease:

http://www.lung.org/lung-health-and-diseases/warning-signs-of-lung-disease/

Endorsed the following:

https://www.inspire.com/groups/american-lung-association-lung-disease/

Obesity

https://www.obesityaction.org/community/find-support-connect/find-a-support-group/

Spinal Cord Injury

http://sci.rutgers.edu/

Due to our interest in helping and enabling patients and their caregivers, a founding group was established.