Pain Partner Partnering with Chronic Pain Patients and Caregivers to Educate, Engage, and Empower Pamela Katz Ressler Tufts University December 9, 2008

Facts about Pain  Pain is the #1 cause of physician visits in U.S.  105 million Americans suffer from chronic pain  15-20% of children suffer from chronic pain  Cost of pain in our society is >$100 Billion per year  Chronic back pain is the leading cause of disability in <45 year olds in the U.S.  Aging population will lead to increase in chronic pain patients over the next decade.

Facts About Pain  Chronic pain is different than Acute pain.  Acute pain is self-limited, resolves in expected time frame in relation to injury.  Chronic pain does not resolve in expected time frame.  Often does not have physical findings with diagnostic testing  Equal opportunity condition  Is treatable but not always curable  Creates isolation from traditional social structures and community

Who will be using Pain Partner?

Faces of Chronic Pain

Chronic Pain Patients  Men and women, typically years old  Under stress because of diagnosis  Different levels of computer proficiency  Various levels of literacy and heath literacy  Will find the website through a search engine or through a direct referral to the site.

Parents of Children with Chronic Pain  User will typically be female (child’s mother), years old  Interested in connecting with other parents of chronically ill children  May have different levels of literacy and health literacy, but will probably be computer literate

Caregivers of Chronic Pain Patients  > 50% will be female, years old  May be long-distance caregivers  Will be seeking information and support  Different literacy and health literacy levels  Varying levels of internet proficiency

Why Do We Need Another Pain Site?  Many sites currently provide information about pain management:  American Chronic Pain Foundation  Massachusetts Pain Initiative  National Pain Foundation  None of these sites address the social isolation of chronic pain by providing opportunities for social networking, as well as tools of information and patient advocacy

Pain Partner Meets the Need  Pain Partner Educates  Pain Partner Engages  Pain Partner Empowers  Pain Partner meets the needs of various target populations by providing online tools to educate, engage, and empower the chronic pain patient and caregiver in gaining control over pain.

Search Site WELCOME TO PAIN PARTNER EDUCATE, ENGAGE, EMPOWER How can Pain Partner help me? I have chronic pain I care for someone with chronic pain My child has chronic pain Watch a short video on how Pain Partner can help YOU Meet our NEWEST Pain Partner Members Contact Us

I Have Chronic Pain Engage Ask an Expert Discussion Board My Personal Pain Partner Pag e Share Video Photo Gallery Connect with Others Educate Conditions/Diseases Pain Terms Glossary Online Resources Empower Pain Journal Medication Log Appointment Checklist Search Site Log In/Register Click on an image to see & hear how these Pain Partners are living with chronic pain 12/9/08 We now have 12,567 members!

Educate  Site generated static content will serve to inform and educate the chronic pain patient or caregiver  Information Sheets on various diseases and conditions  Glossary of Pain Terms  Online resources for more information  Information will be reviewed and updated frequently by medical advisors to Pain Partner

Information Sheet on Shingles

I Have Chronic Pain Engage Ask an Expert Discussion Board My Personal Pain Partner Pag e Share Video Photo Gallery Connect with Others Educate Conditions/Diseases Pain Terms Glossary Online Resources Empower Pain Journal Medication Log Appointment Checklist Search Site Log In/Register Click on an image to see & hear how these Pain Partners are living with chronic pain 12/9/08 We now have 12,567 members!

Engage  Interactive, user generated features to create online communities for social support and engage with others around the issue of chronic pain  My Pain Partner Personal Page Blogging capability Post Video Photo Gallery Facebook Group Twitter Group  Discussion Forum  Ask the Expert  Registration and log-in is required to use interactive features and to post comments on the site

I Have Chronic Pain Engage Ask an Expert Discussion Board My Personal Pain Partner Pag e Share Video Photo Gallery Connect with Others Educate Conditions/Diseases Pain Terms Glossary Online Resources Empower Pain Journal Medication Log Appointment Checklist Search Site Log In/Register Click on an image to see & hear how these Pain Partners are living with chronic pain 12/9/08 We now have 12,567 members!

Empower  Site generated tools to empower patients and caregivers to communicate and advocate more effectively about their chronic pain  Pain Journal  Medication Log  Appointment Checklist  Tools will be provided in both PDF and online formats for individual user preference

Page from Pain Journal (PDF)

Funding for Pain Partner  Grant funding  MayDay Fund  Sponsorships with education foundations of major corporations  Blue Cross Blue Shield Foundation  Purdue Pharma Educational Foundation  PainPartner.org will be incorporated as a non-profit entity to allow for tax deductible donations for ongoing expenses  No advertisements will be on the website

Marketing of Pain Partner  Launch date will be September 2009 which will coincide with National Pain Awareness Month  Pre-launch publicity blitz by public relations campaign tie in to health care organizations and patient advocacy organizations around National Pain Awareness Month  Generate pre-launch buzz by targeting potential user groups to test and evaluate site as members of a Pain Partner Member Advisory Board  Target key health care practices with large chronic pain patient populations and introduce them to the Pain Partner concept pre-launch with follow-up post-launch

Evaluation of Pain Partner  Evaluation will be ongoing and measured in number of user visits, length of time on site, repeat visits, number of members, outside links into the site, and site placement on representative search engines sites  Website will be evaluated prior to launch and then periodically by representative target population users (in formative evaluation methods) with emphasis on appeal, usability and effectiveness

Pain Partner Partnering with Chronic Pain Patients and Caregivers to Educate, Engage, and Empower Thank you … Questions?