CINCH

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CINCH Clinical Investigation of Neurological
Channelopathies December 15, 2003 Rochester,
NY Design of Web-based Information
Systems Patrick E. Cochran, Ph.D.,
C.S.D. Periodic Paralysis Association
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Planning

• Identify Target Communities CINCH
  Researchers Rare Disease Community Public Healt
  h Care Providers
• Establish Goals Objectives
• Develop (strategic) Implementation
  Plan Gatekeepers (who is accountable) Priorities
  (action items) Time Line (due dates)
• Execute Plan
• Audit Report Progress

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Purposedefines design content

• To acquaint people with our research and attract
  potential subjects
• To educate the lay public about these diseases
• To provide links with the lay organizations
• To provide links with research centers
• To develop diagnostic flow charts and eventually
  detail the natural history

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Purpose

• To describe the molecular defects and diagnostic
  resources
• To describe standards of care
• To indicate ties to industry that provide novel
  treatments
• To describe strategies for living with the
  disorders
• To list links to publications

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Contentdefines design security

• Descriptions of Disorders Investigated
• Descriptions of Research and Explanation
• Descriptions of Protections/Processes
• Progress and Learning
• Resources Contacts

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Content

• Site Quality Oversight Committee
• Peer Review
• Consensus where possible
• Best Practices where available

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Content

• Need for New Information
• Frequent Updates
• Site Maintenance

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Levels of Accessdefines design security

• Public (Disclaimer Forced Disclaimer)
• Pass-word Protected Registered.
• Research Participant (patient or family member)
• Research Team
• Guest
• Restricted Access

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Design Resources

• URAC Consumer WebWatchSetting the Public
  Agenda for Online Health Search 200340
  stakeholders reviewed how consumers use the web
  for health information, Issues of Site Structure,
  and identification quality information on the
  web.
• RAND Health Health Information on the Internet
  Accessibility, Quality, and Readability
  -2002Less than one quarter of the search
  engine's first pages of links led to relevant
  content.Sites required high school level or
  greater reading ability.
• Conclusion Accessing health information using
  search engines and simple search terms is not
  efficient

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Security

• HIPAAHealth and Human Services OCR Privacy
  Brief provides a useful summary. More than HIPAA
• Personal Information
• Health Surveys
• Ask-The-Experts
• Registry Data
• Research Data Archives (DTCC)

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Security

• Encryption Key
• This site has a VeriSign Secure Server ID.
• VeriSign has verified the organizational name and
  that the organization has the proof of right to
  use it.
• This site legitimately runs under the auspices of
  the licensed Organization.
• All information sent to this site, if in an SSL
  session, is encrypted, protecting against
  disclosure to third parties.

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AuthenticationAccreditation

• HONCode Health on the Net Foundation
• URACHealth Web Site Accreditation
  ProgramHealth Web Site Standards

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AuthenticationAccreditation

• URAC 53 Health Web Site Standards 5000
  (pre-evaluation 500)
• HONCode 8 Principles
• Free
• Verisign encryption and verification
• 800 1000

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HONCode 8 Principles

• Authority Any medical or health advice provided
  and hosted on this site will only be given by
  medically trained and qualified professionals
  unless a clear statement is made that a piece of
  advice offered is from a non-medically qualified
  individual or organization. 
• Complementarity The information provided on this
  site is designed to support, not replace, the
  relationship that exists between a patient/site
  visitor and his/her existing physician.
• Confidentiality Confidentiality of data relating
  to individual patients and visitors to a
  medical/health Web site, including their
  identity, is respected by this Web site. The Web
  site owners undertake to honor or exceed the
  legal requirements of medical/health information
  privacy that apply in the country and state where
  the Web site and mirror sites are located.

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• Attribution Where appropriate, information
  contained on this site will be supported by clear
  references to source data and, where possible,
  have specific HTML links to that data. The date
  when a clinical page was last modified will be
  clearly displayed (e.g. at the bottom of the
  page).
• Justifiability Any claims relating to the
  benefits/performance of a specific treatment,
  commercial product or service will be supported
  by appropriate, balanced evidence in the manner
  outlined above in Principle 4.
• Transparency of authorship The designers of this
  Web site will seek to provide information in the
  clearest possible manner and provide contact
  addresses for visitors that seek further
  information or support. The Webmaster will
  display his/her E-mail address clearly throughout
  the Web site.  

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• Transparency of sponsorship Support for this Web
  site will be clearly identified, including the
  identities of commercial and non-commercial
  organizations that have contributed funding,
  services or material for the site.  
• Honesty in advertising editorial policy If
  advertising is a source of funding it will be
  clearly stated. A brief description of the
  advertising policy adopted by the Web site owners
  will be displayed on the site. Advertising and
  other promotional material will be presented to
  viewers in a manner and context that facilitates
  differentiation between it and the original
  material created by the institution operating the
  site.

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Thank You