pain partner partnering with chronic pain patients and caregivers to educate, engage, and empower...
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Pain Partner Pain Partner
Partnering with Chronic Pain Patients and Caregivers to Educate, Engage, and
Empower
Pamela Katz ResslerTufts 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 30-75 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), 25-
49 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, 30-65 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 SiteWELCOME TO PAIN WELCOME TO PAIN PARTNERPARTNER
EDUCATE, ENGAGE, EDUCATE, ENGAGE, EMPOWEREMPOWER
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 Contact UsUs
http://PainPartner.org
I Have Chronic PainI Have Chronic Pain
Engage •Ask an Expert•Discussion Board•My Personal Pain Partner Page
•Share Video•Photo Gallery•Connect with Others
Educate
•Conditions/Diseases•Pain Terms Glossary•Online Resources
Empower
•Pain Journal•Medication Log•Appointment Checklist
Search Site
http://www.PainPartner.org
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 PainI Have Chronic Pain
Engage •Ask an Expert•Discussion Board•My Personal Pain Partner Page
•Share Video•Photo Gallery•Connect with Others
Educate
•Conditions/Diseases•Pain Terms Glossary•Online Resources
Empower
•Pain Journal•Medication Log•Appointment Checklist
Search Site
http://www.PainPartner.org
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 PainI Have Chronic Pain
Engage •Ask an Expert•Discussion Board•My Personal Pain Partner Page
•Share Video•Photo Gallery•Connect with Others
Educate
•Conditions/Diseases•Pain Terms Glossary•Online Resources
Empower
•Pain Journal•Medication Log•Appointment Checklist
Search Site
http://www.PainPartner.org
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 Pain Partner
Partnering with Chronic Pain Patients and Caregivers to Educate, Engage, and
Empower
Thank you … Thank you … Questions?Questions?