The pain advocacy community is often criticized as a set of groups that does not play well with each other. “Unwilling to collaborate”, “Stubborn”, “Set in their ways” are some descriptors you may have heard to describe these group of advocates. In light of the bad rap that pain groups get, what I am about to tell you may surprise you.
In March of this year, CreakyJoints traveled to Nashville, TN to join many of these pain advocacy organizations at a roundtable discussion. Fifteen organizations to be exact met in Nashville: 14 consumer pain advocacy organizations, moderated by the State Pain Policy Advocacy Network (SPPAN), gathered for two days to discuss common ground and take the first step towards working in coordination and collaboration with each other.
A Godfather-like meeting of the five families if you will. “How did things ever get this far? Tatalia lost a son…I lost a son..” Alright alright you get the point, I will spare you the rest of my Don Corleone impression.
What was our focus?
How can we better represent your needs, the needs of those living with pain by deciding to speak from one voice to influence change in how pain is viewed and how pain care is provided.
A great deal of advance preparation occurred before the meeting took place, including pre-surveys to investigate where there were mutual interests. The surveys exposed exactly what everyone was afraid of. There was an incredible amount of difference among organization’s priorities. Other than raising public awareness around pain, there was little agreement with respect to the strategies and tactics that should be deployed.
It was evident that everyone attending the meeting exhibited great passion and dedication for the cause, yet our greatest strength was also our greatest weakness. Many communicated with zest and commitment but if we tried to speak collectively, the message was mixed and therefore confusing and diluted. Groups vigorously shared their multitude of activities underway to promote our cause, however without an organized synergy between groups, it was clear that our communication was doomed. In many ways the group’s sense of urgency was holding us hostage.
What did we learn to change our path?
Successful collaboration requires two essential elements: trust and a systematic decision making process. Betrayal of trust is considered the immortal sin of leadership. Failure to follow predefined steps of the group’s agreed upon decision-making process sets the stage for failure in any collaboration. In Nashville, rules were set early so everyone could work from the same place. I think these rules are universal and work well with diverse groups. They are the following:
- Check your organization hat at the door
- Don’t be afraid to provide your thoughts and insights
- Everything needs to be said, not everyone needs to say it
- Question to understand, not to argue
- Be on time
- Cell phones and side conversations outside the room
What a great start!
The highlight for CreakyJoints attending this meeting was seeing the extremely diverse groups eventually reach consensus on four key talking points that all support and are willing to adopt within their organization’s advocacy initiatives. Take a look. Tell us what you think.
- Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions
- Chronic pain is an unrecognized and under resourced public health crisis with devastating personal and economic impact
- Effective pain care requires access to a wide range of treatment options
- Allowing people to suffer with unmanaged pain is immoral and unethical
At CreakyJoints we are proud of these points and believe they can become new building blocks to change the culture of pain and its treatment–in keeping with the Institute of Medicine’s report on pain released in June 2011, “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research”.
The group agreed on, and selected leaders to be accountable for, each step of a seven-part work plan to implement this project statement. Recognizing the summer deadlines to complete several steps of the plan, the SPPAN Director will facilitate regular meetings among the leaders to determine the best way to achieve these goals.
Although the degree of support for the project statement and key messages varied among the participants, each leader nevertheless agreed to join in the group’s endorsement of these meeting products. Results of a post-meeting survey revealed that 100% of the respondents were “Very Satisfied/Satisfied” with the results of the meeting; 100% answered “Yes, I remain committed to the collective process moving forward”.
Please send kudos to these organizations! In attendance were:
- American Chronic Pain Association
- Chronic Pain Research Alliance
- Global Healthy Living Foundation
- Interstitial Cystitis Foundation
- National Fibromyalgia & Chronic Pain Association
- National Patient Advocate Foundation
- Neuropathy Association
- Pain Connection
- Pain Action Alliance to Implement a National Strategy (PAINS)
- Power of Pain Foundation
- Reflex Sympathetic Dystrophy Syndrome Association
- The Pain Community
- US Pain Foundation
The meeting of the “five families” was a success! We now have proof that by committing to a pre-agreed upon universal set of collaboration rules, pain advocacy can productively work together. I wish to express our gratitude to the SPPAN staff, 9By9Solutions, the American Academy of Pain Management and all others who made this event possible. This promises to be exciting work. We plan to keep you informed along the way and ask for your involvement and action at critical moments. Stay tuned!