About Us

Pain  Advocacy Coalition is a loose knit collaborative group of patients who live with intractable pain. We are your co-workers, neighbors, friends, and family members. We are a collaborative group of former police officers, former nurses, researchers, technical writers, social media consultants, medical assistants and other varied professional backgrounds. We all share one common bond, we live with chronic pain daily, and many of us use opioids as a treatment modality to help us manage our pain effectively. We are not a volunteer organization. We are a tribe of individuals who are crowd-sourcing a solution to a common problem impacting our lives via collaborative tools. We are inviting the pain community to participate.

The medical administration of opioids for analgesia are utilized in tandem with other medical treatments, individualized to the patient’s needs, and are implemented only when other treatments are not successful for relieving pain. The use of prescribed opioid analgesia permits us to successfully participate in activities of daily living and to meet our obligations.

Opioids, when used as an analgesic, allow us to redeem some quality of life from intractable pain. Often, we experience only partial relief from analgesics. We are not able to participate in our lives at the same capacity as we once did prior to becoming pain patients. However, without opioid analgesics, many of us would decline further, experience decreased mobility, increased pain, decreased productivity and other negative outcomes.

The “opioid crisis” and the implementation of draconian policies by Center for Disease Control (CDC) that restrict prescribing opioids for legitimate pain patients have mobilized the pain community to coalesce and address the negative impact these policies have had on our community.

The Pain Advocacy Coalition grassroots movement is dedicated to addressing the “opioid crisis” by:

  • raising public awareness about the impact of pain on patients, both acute and chronic
  • bringing transparency to the negative impact the Center for Disease Control’s guidelines have had on the pain community and their healthcare providers
  • challenging the status quo and empowering pain patients to utilize collaborative tools and platforms
  • participating in a national conversation about our healthcare decisions that previously the pain community has largely been excluded from
  • restoring the patient- physician- pharmacist relationship
  • preventing detrimental special interest and government interference in the provision of medical care
  • challenging stigma, discrimination, profiling, narrow narrative and marginalization that contribute to the obstacles and barriers that pain patients experience
  • challenging the media to to offer the public balanced reporting about the “opioid crisis” including equal time outlining the impact to pain patients (acute/ chronic) and the medical community at large
  • challenging the methods by which data is obtained, research is conducted, how research is funded and how statistics are being utilized to make individual medical decisions from a board room, a legislative office, third party administrator’s office or an oversight office

We intend to bring transparency to restrictive policies that are not thought of as patient-centric, but are more accurately described as profit driven. For a more expansive examination of this complex issue, check out the Pain Advocacy Coalition’s Platform.

For an expanded look at the issues pain patients across the country are facing check out this recent news report by I-team reporter George Knapp and his fellow reporters courtesy of LasVegasNow- KLAS-TV-8 report published on December 1, 2017.

The Other Side of Opioids #OurPain

“Millions of Americans who rely on opioid medications for pain relief are in anguish because of government pressure to reduce prescriptions across the board. Doctors, pharmacists, and other providers have already made drastic cuts in the amount of pain medicine they dispense, with more cuts on the way.”

Video Credit: Matthew Adams

As a result of these changes, the Pain Advocacy Coalition is extending an invitation to everyone to join our #ShareOurPain initiative to advocate for patients and their caregivers to preserve treatment options for patients who are experiencing pain.

Inevitably, the intractable and acute pain community will need to stand together.

Video Credit: Advocates Children and Youth

Prevalence of Pain in 2012

Patients who use opioids to treat legitimate intractable pain typically have exhausted all other modalities. The pursuit of a non-opioid treatment option  or “conservative treatment” can lead to medical bankruptcy and/ or medical complications before the use of opioids is implemented.

The National Health Interview Survey 2012 (NHIS) that 25 million people in the United States suffer from chronic pain.

The survey goes on to explain:

The Center for Disease Control (CDC)’s NHIS is an annual study in which tens of thousands of Americans are interviewed about their health- and illness-related experiences. The 2012 NHIS asked participants about the frequency and intensity of pain experienced in the prior 3 months. The survey results are based on combined data from 8,781 American adults from a subsection of the larger NHIS.

Researchers assigned pain severity using an approach developed by CDC investigators working with the Washington Group on Disability Statistics, which provides four categories of pain.* Among the findings of the analysis:

  • An estimated 23.4 million adults (10.3 percent) experience a lot of pain.
  • An estimated 126 million adults (55.7 percent) reported some type of pain in the 3 months prior to the survey.
  • Adults in the two most severe pain groups were likely to have worse health status, use more health care, and suffer from more disability than those with less severe pain. However, approximately half of individuals with the most severe pain still rated their overall health as good or better.
  • There were associations between pain severity and race, ethnicity, language preference, gender, and age. Women, older individuals, and non-Hispanics were more likely to report any pain, while Asians were less likely.
  • Minorities who did not choose to be interviewed in English are markedly less likely to report pain.
  • The impact of gender on pain varies by race and ethnicity.

“This report begins to answer calls for better national data on the nature and extent of the pain problem,” said Richard L. Nahin, Ph.D., M.P.H., lead epidemiologist for NCCIH and author of the analysis. “The experience of pain is subjective. It’s not surprising then that the data show varied responses to pain even in those with similar levels of pain. Continuing analyses of these data may help identify subpopulations that would benefit from additional pain treatment options.”

Americans Are Still in Pain

In 2015, NIH introduces a new analysis of the 2012 NHIS information that further addresses the prevalence of pain by stating:

It found that an estimated 25.3 million adults (11.2 percent) experience chronic pain—that is, they had pain every day for the preceding 3 months. Nearly 40 million adults (17.6 percent) experience severe levels of pain. Those with severe pain are also likely to have worse health status. The analysis was funded by the National Institutes of Health’s National Center for Complementary and Integrative Health (NCCIH) and was published in The Journal of Pain.

“The number of people who suffer from severe and chronic pain is striking,” said Josephine P. Briggs, M.D., director of NCCIH. “This analysis adds valuable new scope to our understanding of pain and could inform the National Pain Strategy in the areas of population research and disparities. It may help shape future research, development, and targeting of effective pain interventions, including complementary health approaches.”

Read more about the 2012/ 2015 NIH reports.

https://nccih.nih.gov/news/press/08112015

https://nccih.nih.gov/research/statistics/NHIS/2012/pain/severity.

To summarize, 126 million patients experience ongoing pain for 3 months consecutively in a one year time frame. There are 25-40 million people who suffer chronic pain and require long-term intervention.

Intractable pain does not go away, and it can be fatal in some cases if it is left untreated. The CDC has initiated supposedly voluntary guidelines about the prescribing of opioids by primary care physicians, but those guidelines have become draconian policy, eroding the patient-physician- pharmacist relationship.

For these reasons, our collaborative group supports patients experiencing all forms of pain and their healthcare providers to provide an individualized plan of care. We believe that long-term healthcare decisions should not be unduly influenced by special interests, government agencies or policy makers.

The decision to add opioids to an individualized plan of care is implemented only after the patient experiences a significant decline in function and productivity. Opioids to treat chronic pain are administered by medical professionals who currently utilize strict guidelines and stringent oversight with an emphasis for patients to regain their mobility and participate in their activities of daily living.

A prohibition of opioids will not stem the tide of illicit Fentanyl from streaming over the United States (US) borders nor will it stop unintended overdoses. However, opioid prohibition will prevent millions from successfully participating in their daily lives at their fullest capacity.

With that said, we are not callous to the significant loss of life for those who have lost their lives due to illicit opioids flooding across the borders into our country, and we offer our sincere condolences to everyone who has experienced such sorrowful tragedy.

Center for Disease Control Guidelines

Due to healthcare policy changes, many patients have lost access to the only treatment that is effective to relieve their pain. Patients are reporting they are being forced to taper medications. They also report being unable to refill their opioid prescriptions at pharmacies. Physicians are implementing drastic measures based on “following” the Center for Disease Control Guideline restrictions on prescribing opioids.

The CDC guidelines were never originally intended to impact patients with chronic pain. The new guidelines were voluntary and aimed at primary care physicians not pain management physicians. As it stands now, niether primary physicians or pain management physicians want to care for patients with intractable pain because we are a “liability.”

The implementation of these new guidelines have created a snowball effect. This resulted in both primary care and pain management physicians rapidly “dumping patients” who are prescribed opioids out of sheer concern for their license and assets. Healthcare providers have been made “examples of” by the drug enforcement agency (DEA), by arresting and prosecuting physicians for failing to follow CDC’s new guidelines.

The idea of voluntary compliance seems to have been lost in the hysteria.

Our opinion is the CDC guidelines is based on flawed research, driven by special interests and by DEA over-reach. A narrow mainstream media narrative and public hysteria has also contributed to a negative outcome. This combination has resulted in a failed drug policy that has created “pain refugees” being “dumped” by their healthcare providers leaving them with few, if any treatment options for their pain.

The guidelines were implemented without sufficient planning or viable options for the pain community to turn to for alternative treatments that are effective. Let’s clarify, equal to the effectiveness of opioid therapy for analgesia. There are a lot of faux designer patented drugs out there, but they are expensive, fraught with side effects, and often they don’t work.

These issues are further magnified by extreme healthcare bias, discrimination, marginalization, and social stigma based on misinformation about the complexity of the pain phenomena.

Pain is now the “new leprosy!”

Actually, pain patients are now, the “new minority.”

Chastised, abandoned, silenced and marginalized.

Competent pain management physicians are leaving their practice in fear of losing their license and having their assets seized for prescribing opioids. This intended or unintended outcome is leaving a wake of “pain refugees” without sufficient access to medical care or pain relief.

These events are unfolding as waves of unwarranted hardship impacting  stable patients, and their healthcare providers. There is no justification for this kind of unethical and inhumane treatment. The only perceived “crime” that these patients have committed is the misfortune of having a diagnosis that requires opioids to manage their pain. The only crime most physicians have committed is wanting to treat their patients with autonomy to relieve their pain.

The pain community is being gas-lighted and scape-goated. Our community is being blamed for the rise of unintentional overdoses that are fueled by illicit Fentanyl pouring in from other countries. We are suffering consequences for an “opioid crisis” or “drug war” that many legitimate patients and their healthcare providers have had absolutely no control over, and have never contributed to.

As a result of opioid hysteria, a term coined largely by intractable pain patients in response to being scapegoated, patients are being blamed for the influx of illicit opiates like Fentanyl from other countries including Mexico, Afghanistan and China. This stance against patients is preferable to the Drug Enforcement Agency and other over-sight agencies than admitting that the “war on drugs” is an “epic fail!”

So, the pain community continues to be thrown under the opioid bus rather than re-group or change policy.

The facts supporting our position are beginning to pour in and mainstream media is slowly bringing transparency to the this issue. However, untold damage has already been incurred by the pain community that can’t be reversed. There a lot of special interests invested in perpetuating the “opioid hysteria” as it serves their bottom lines very nicely.

We can only go forward by rescinding the CDC guidelines as a failed policy, and in light of new information, it will be the pain community’s responsibility to inform the public of the truth.

We intend to raise public awareness about the facts by raising our voices!

As a community, our mission is to make sure this undue harassment never happens to legitimate pain patients again.

So, how will we overcome obstacles to eAdvocate for our community?

Pain Advocacy Obstacles

The pain community is vulnerable because of the very nature of pain. Patients with pain are less likely to advocate for themselves because of decreased mobility, lack of resources, isolation and the cost of medical care. Their lack of resources leave these kinds of patients at a clear disadvantage and our opponents know it, and they quietly capitalize on it. It is highly unlikely large crowds of disabled, elderly patients will co-ordinate or attend protests or marches, or even go to their local legislator’s office.

The pain community are more vulnerable because they fear they may lose all access to any legitimate pain relief, if they speak up.

In many cases, pain patient are more reliant on others to advocate on their behalf simply because they are vulnerable and occupied with managing their conditions.

With that said,  it bears repeating there are those who might attempt to capitalize on this vulnerability and push forth their own agenda without soliciting feedback from the pain community regarding the consequences.

Status Quo

Pain patients have traditionally been silenced about their pain. Patients are conditioned through repetition and discouraged to advocate for themselves. Patient’s complaints of ongoing pain are not validated and patients are treated with immediate suspicion, minimized, shamed and ridiculed.

Patients are often berated for being “unable to manage their pain effectively” without the use of opioids. They are met with “disbelief” about the severity of their pain. Patients are stonewalled when people insinuate “it’s all in your head.” This prevents patients from receiving timely medical intervention.

Dr. Stephen Grinstead offers insight into the obstacles pain patients face in addition to their coping with their diagnosis.

Video Credit: Dr. Stephen Grinstead

Eventually, patients can suffer complications because their pain is not intervened upon in a reasonable time frame. Their pain is subtly ignored until the pain is no longer subjective but objective, as evidenced by test results or clinical imaging or blatant complications.

By that point, the patient has often lost their job, lost access to insurance coverage and access to medical care. Third-party administrators benefit from minimizing patient’s complaints of pain by pocketing billions in profits. They also profit by micro- managing healthcare providers through intimidation into utilizing “conservative treatment” or “protocols” that withhold more assertive or “costly interventions” until the patient has complications, or rolls over to disability, federal/ state aid. This is unacceptable.

Meanwhile, taxpayers get to pick up the tab for disability and third- party administrators report record earning to their stakeholders.

We won’t even go into pain patient’s psychosocial losses associated with losing their career, their income, identity, hobbies, activities, and most importantly, treasured relationships.

If a patient’s complaint of pain were acknowledged and addressed in an acceptable time-frame, poor outcomes could be avoided.

To remedy this issue, it would be necessary for the public to demand additional oversight of third-party administrator’s accountability for favorable patient outcomes.

Oh, wait…that was Obamacare and you witnessed how third- party-administrators and politicians literally shut down the government over that.

Legitimate intractable pain patients are convienently excluded from conversations about pain, available treatments and the use of opioids as a treatment option. This push back occurs in their MD offices, pharmacies, and around the dinner table with family and friends.  It is occurring at a state/ federal level because evidently pain patient’s can not be trusted to give thoughtful feedback.

Pain is an unpleasant complex subject for everyone, but this is a conversation that must be had by society as a whole, otherwise millions of acute and chronic pain patients will be left to suffer needlessly if the “status quo” prevails.

A Call to Action

This national dialogue about opioids must include the pain community and their caregivers. We can not afford to allow others to speak for us and continue to make decisions that impact our daily lives.

Circumstances surrounding eliminating access to adequate pain management dictates that the pain community can no longer place faith in those entities or individuals who are charged with our interests.

The pain community can no longer depend on institutions who look to special interests to financially support them, to also protect and advocate on our behalf. We also can no longer rely upon the main-stream media to portray our community thoughtfully or provide the public with the full story.

We do not have the good fortune to stand idly by hoping that what we feel is best for us, will be done. It is imperative that we take immediate and decisive collective intervention to break the status-quo.

The issue has become so skewed and complex, we can no longer rely upon figureheads, self-appointed spokespersons or other community healthcare leaders to represent the needs of the pain community. The time has come for the pain community to advocate for themselves, using technology, social media and collaborative tools.

The narrow narrative about the pain community is about to change.

Image Credit: Logmakr.com

#ShareOurPain Initiative

The Pain Advocacy Coalition #shareourpain intitiative is dedicated to advocating for changes in healthcare policy by empowering the pain community to advocate for themselves in the era of collaborative tools and social media.

Collaborative Tools and the 21st Century

Collaborative tools are created explicitly to empower people to collectively  define, address and solve their own problems. Thankfully, we live in an age where we can access these tools, overcoming physical and geographical boundaries, to define and successfully crowd-source a solution to a common problem. We will co-operate to amplify our community’s message through e-Advocacy by utilizing collaborative tools.

Grass- Roots Movement

We are actively engaged in collaborating with individuals and advocacy groups in a grass-roots movement to solicit changes to the CDC guidelines and increase the public’s current knowledge base regarding the diagnosis of acute/ intractable pain and the available treatment options, or lack there-of.

We are advocating for a more humane medical approach for those who live with intractable and acute pain.

Join Us

We are a self-funded group unaffiliated with any other organizations or special interests. This project is proposed by pain patients, for pain patients, to empower our community to collaborate effectively. We will work collectively to refute misinformation, raise public and media awareness, and empower ourselves to have a voice in our own healthcare choices.

We will also stand in solidarity with pain management physicians who have served our community in good faith.

We hope you will join us!

Even patients who are at a disadvantage in advocating for themselves for obvious reasons can still participate with the help of a caregiver. This vulnerability is an issue that is often exploited, but it is an issue we intend to correct through encouraging the pain community to use collaborative tools and social media platforms.

Our motto is…. “it’s not a conversation about us, without us!”

We believe the healthcare process is inclusive- not exclusive!

The pain community has no other choice but to step out of the stigma shadow, collaborate, refute misinformation, change the narrative, confront policy makers, mainstream media and special interests who are resolved to implement opioid prohibition despite the pain community’s outcry of “foul play!”

It is our mission to equip our community to step up to address the federal and state level discussion about opioids with their legislators, physicians, pharmacists, local communities, third-party administrators, oversight agencies, healthcare providers, and enforcement agencies through the use of technology.

It should be stated that the content and opinions expressed on this website are based solely on each member’s individual research, experience and  opinion. All opinions published on this website are the individual author’s  personal perspective of the issues that are facing the pain community.

We are encouraging patients to research the issues for themselves, draw their own conclusions, and take appropriate action to make their concerns known in their communities by using the very same collaborative tools to refute policy makers who utilize collaborative tools to implement failed policy.

Our commentary should not replace, or be represented as disseminating medical advice to anyone. We are not physicians. If you are seeking medical care or having a medical emergency, we are encouraging you to contact your healthcare provider for individualized medical care or dial 911.

With that said, we fully recognize the options for patients in pain to gain access to adequate pain relief or access to appropriate mental health services tailored for pain patients are dwindling to few options or none.

eAdvocacy Future

Our future includes looking forward to collaborating with all of you in upcoming online events. We hope you will explore the Call to Action page on this website for more information on how to use collaborative tools to build a solid social media foundation.  Also, check out our #shareourpain Portfolio for some examples of how we have used e-advocacy to amplify our message. We hope that we have inspired our community to take e-Advocacy to the next level.

We would love to feature your success using collaborative tools and eAdvocacy on our Testimonials page. Give us a “shout out” and let’s dialogue about featuring your advocacy journey!

 

 

 

 

 

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Pain Advocacy Coalition Platform

The Pain Advocacy Coalition #ShareOurPain initiative is a grass-roots, patient-centric movement empowering patients and caregivers to successfully advocate through the use of collaborative tools, social media platforms and social media strategy. We are advocating to bring about social and healthcare policy reform impacting patients diagnosed with acute or intractable pain.

The Stigma and Social Consequences of Chronic Pain: A Patient’s Story

Video Credit: Pain Management/ Karen Smith

Karen Smith’s story represents some of the obstacles that patients with acute and intractable pain patients face daily warranting a “call to action” to change healthcare policy and social attitudes that are negatively impacting millions of patients from obtaining effective, cost efficient medical care with dignity.

Social Change and eAdvocacy

Through collaborative tools and crowd sourcing a common problem, we will impact social change to reform healthcare policy through eAdvocacy to advocate for patients like Karen Smith, and millions other like her, who have shared her medical experience.

 

Video Credit: Ford Foundation

We are creating political opportunity, organizational infrastructure, while engaging people to unite and change healthcare policy and social reform through e-advocacy.

Video Credit: Advocacy eLab

Through education, mobilization, policy reform, and advancing public awareness the pain community is collectively putting forth the following platform for change.

Opioid Policy

By utilizing research, collaborative tools and social media strategy the Pain Advocacy Coalition (PAC) will advocate for rescinding the current Center for Disease Control’s (CDC) policies by:

  • encouraging dialogue with policy makers, special interests, and oversight agencies to recognize the negative impact of the CDC guidelines on patients experiencing acute/ intractable pain
  • urging policy makers, special interests, and oversight agencies to stop new legislation that restricts prescribing opioids to patients until viable research, treatments and medical modalities for pain have demonstrated reliability through sufficient trials establishing their efficacy in comparison with opioids
  • refuting third-party administrators efforts to further deny coverage to restrict treatment of acute/ intractable pain with opioids
  • empowering patients and caregivers to contribute to state/federal policy discussions impacting medical care for acute and intractable pain patients
  • derailing state/ federal legislation and policy guidelines that restrict physician’s autonomy to provide individualized care to patients in acute/ chronic pain
  • ensuring that information and data obtained from the Prescription Drug Monitoring Program (PDMP) is utilized appropriately including discouraging profiling of patients or physicians, accurate and efficient follow up on complaints if there are errors identified, and preventing mis-use of data to profit

 

Public Awareness

By utilizing research, collaborative tools and social media strategy the Pain Advocacy Coalition (PAC) will address raising public awareness about the “opioid crisis” by:

  • informing the public about treatment of acute/ intractable pain patients utilizing opioids for effective analgesia
  • correcting misconceptions about the opioid crisis, including clarifying to the public that the culprit contributing to unintended overdoses is illicit Fentanyl (synthetic analogues) distributed illegally from China, Mexico and Afghanistan
  • clarifying to the public the influx of “illicit” Fentanyl is not related to over prescribing opioids or Fentanyl by licensed pain management physicians to legitimate patients
  • educating the public that new state legislation, third-party administrators, and special interests are rolling out guidelines that are not well researched, will dramatically impact the acute pain population’s access to adequate opioid analgesia in 2018
  • disseminating information about the deadly nature and medical complications associated with intractable pain

 

Research

By utilizing research, collaborative tools and social media strategy the Pain Advocacy Coalition (PAC) will address raising awareness about current research about opioids by:

  • disputing the use of flawed research and/ or statistics to implement a opioid prohibition resulting in harm to patients and the medical community
  • disputing flawed research and/ or statistics to justify extreme government over reach that significantly interferes with the patient/ physician/ pharmacist relationship
  • advocating future research is free of special interest profit motives and government interference
  • advocating for research for viable treatments that equal opioid analgesia’s effectiveness

 

Individualized Patient Care

By utilizing research, collaborative tools and social media strategy the Pain Advocacy Coalition (PAC) will address protecting individualized patient care by:

  • protecting all patient’s educated healthcare choices made mutually with their physician to implement opioids as part of their treatment plan
  • advocating for individualized medical care, not a “one size fits all approach”  to manage pain in the event other medical modalities are deemed unsuccessful
  • restoring autonomy and latitude to physicians to make healthcare decisions about prescribing opioids with their patients without the burden of fear, threat or harm to their ability to practice medicine or maintaining their assets
  • restoring the eroded patient-physician-pharmacist relationship from one of suspicion to a relationship of mutual trust
  • ceasing inappropriate mass diagnosis of chronic pain patients with Opiate Use Disorder (OUD) merely because opioids are a part of a patient’s short or long-term treatment plan
  • providing intractable pain patients with individualized psychosocial support tailored specifically for the needs of the pain community, which differ significantly from the needs of the mental health community and / or the needs of an individual coping with addiction
  • supporting pain management physicians to restore their clinical autonomy from physician groups who implement protocols that are more stringent than mainstream guidelines to ensure third-party administrators will reimburse them, leaving patients receiving different care from different facilities and destroying continuity of care
  • challenging government oversight agencies from interfering with pharmacies delivering medications lawfully
  • preventing pharmacists from practicing medicine and/ or profiling physicians/ patients on behalf of over sight agencies by using the Prescription Drug Monitoring Program (PDMP)
  • challenging the prevalence and practice of under-diagnosis of pain, under-medicating symptoms of pain, or over-medicating with patented drugs that are often ineffective or have side effects, over utilization of injections, as a viable alternative to offering treatment with opiates, when all other treatment modalities have failed
  • requiring healthcare providers  to have continued education addressing “healthcare bias” when treating patients with acute or intractable pain
  • demanding pain management is delivered within a reasonable time frame prior to patient’s declining, losing their livelihood, experiencing bankruptcy, ultimately being marginalized, and thrust unwillingly into disability or in some cases, accelerated mortality

Media

By utilizing research, collaborative tools and social media strategy the Pain Advocacy Coalition (PAC) will address raising mainstream media’s awareness by:

  • challenging the narrow narrative mainstream media is perpetuating about  prescribing opioids for treatment of acute and intractable pain
  • correcting the mainstream media’s narrow narrative about the impact of the CDC guidelines on the pain community and healthcare providers, including flawed research/ statistics, the source of illicit Fentanyl contributing to unintended overdoses, the over reach by oversight agencies, and the erosion of the patient- physician-pharmacist relationship
  • encouraging media to widen the scope of reporting by bringing transparency to policy makers and special interest’s profit motive by implementing a prohibition of opioids in favor of up “selling” patented drugs (which are expensive with multiple side effects and often ineffective), injections (that are invasive, expensive, short term- treatments), and bill third-party administrators for rehabilitation (not tailored for pain patients but more appropriate for individuals who are coping with addiction or mental health crisis)

Patient Empowerment

By utilizing research, collaborative tools and social media strategy the Pain Advocacy Coalition (PAC) will foster patient empowerment by:

  • encouraging patients to have a voice and a stake in their treatment including protecting individualized plans of care for pain
  • encouraging patients to participate or derail state/ federal legislation about opioids for patients with the diagnosis of acute/ chronic pain
  • establishing protections for patients from healthcare gender or racial bias, profiling, discrimination, opioid bias and all other forms of marginalization
  • develop quality assurance measures that ensure a patient’s complaint is documented, validated and intervened upon in a reasonable time frame to prevent mis-diagnosis, under-diagnosis, complications and harm
  • offering the pain community collaborative tools, to crowdsource common problems, social media strategy and eAdvocacy to amplify their message
  • providing information packets of factual literature to the pain community to assist them to raise public awareness about misconceptions surrounding the “opioid epidemic”
  • challenging institutions that support known figureheads of healthcare initiatives based on flawed data and misinformation that restrict opioid treatments and potentially harm patients

We are dedicated to ensuring all acute and chronic pain patients are treated humanely with dignity, including protecting a patient’s decision to implement the use of opioids if deemed appropriate by a licensed pain management physician in tandem with patient education.

Ongoing Protections

As a result of implementation of the CDC guidelines, that were initially directed at primary care physicians, an unintended “mandate” was put into action without public approval for legislators, third-party administrator and special interests to dictate medical care to physicians and patients.

This has resulted in a wreckless erosion in the patient-physician-pharmacist relationship, opioid phobia, stigma, and decreased access to medical care, for millions of patients suffering in pain, including both reduced access to pain management physicians and primary medical care, resulting in complications related to under-treatment of pain, or failure to diagnose in a reasonable time frame.

It’s clear that patients living with pain will need to demand future ongoing guarantees to protect their rights to direct their own individualized medical care in partnership with a licensed pain management physician/ primary care physician without fear of undue burden, stigma, hardship or government/ special interest interference or over reach.

We hope our actions will elicit a national conversation and collaborative groups will form in each of our states, inspiring not only the pain community, but the public to take action and support treating all pain ethically, delivered in a reasonable time-frame with equanimity, humanely with compassion going forward so that patients will not suffer the ramifications of untreated or under-treated pain unnecessarily.

For more information, follow #ShareOurPain blog, or check out the Portfolio for a more pragmatic description of our eAdvocacy efforts in action.

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#ShareOurPain Blog

Welcome to the Pain Advocacy Coalition’s #ShareOurPain blog!

Check out the blog regularly for new posts about current events and the pain community’s eAdvocacy efforts.

The #ShareOurPain blog will compare/ contrast articles/ research about current issues impacting the pain community, and we will collaborate or support community calls for action.

This project and blog is designed to be patient-centric, giving the pain community a unified voice about current issues, and tackling these issues cohesively.

This website and blog are powered by patients, for patients to foster eAdvocacy.

We welcome your feedback and comments.

We want to create and discover creative and effective opportunities to collectively advocate for our community.

 

 

This blog is created “by patients, for patients” with an emphasis on acute and intractable pain related healthcare topics including:

  • raising public awareness about the complexity of acute and intractable pain and the need to preserve patient options for treatment
  • rolling back the CDC guidelines, and other healthcare policy that is having a negative impact on the pain community
  • challenging healthcare bias and stigma of pain patients including labeling legitimate pain patients with inappropriate diagnosis intended for addicts, such as Opiate Use Disorder (O.U.D.)
  • highlighting the lethal nature of untreated pain and it’s consequences, including the risk of suicide and the impact of prohibition on safety
  • preserving patient rights to include timely diagnosis and access to effective treatment modalities
  • challenging the mainstream media’s narrow narrative about pain patients and pain treatment further fueling stigma
  • questioning current research being utilized as a reliable data for restricting patient treatment options
  • protecting pain management physicians from drug enforcement over-reach
  • protecting the patient-physician-pharmacist relationship
  • providing ongoing future protections to patients and pain management physicians
  • contacting policy makers to end ‘opioid hysteria, opioid bias and healthcare bias” impacting patient’s access to care
  • addressing the influx of illicit drugs entering the United States, as the culprit for unintended overdoses, not prescription opioids that are prescribed by medical professionals for legitimate patients
  • discouraging drug enforcement, oversight agencies, special interests and third-party administrators from practicing medicine or curtailing licensed physicians from practicing medicine
  • examining the profit driven motives behind the “opioid crisis”
  • encouraging patients to be empowered and take direct action when appropriate and possible through the use of collaborative tools and social media strategy

For a more expansive explanation of our project, check out our Pain Advocacy Coalition platform or our About Us page.

The blog will also feature testimonies of pain patients and interviews of subject matter experts to bring transparency to the human impact of pain on patients, families, friends, their local communities as well as the medical community.

We will also demonstrate the cost of lost productivity to our nation, and the burden of increased healthcare costs, when pain is left untreated.

We will discuss the increased reliance on state/federal assistance when patient’s have catastrophic outcomes or complications from unacknowledged and under-treated pain.

We will offer access to articles, studies and information to empower the pain community to take action in light of recent healthcare policy changes, and the projected changes across the US that are expected to sweep the nation in 2018.

We will seek to amplify our unified message until we are heard.

If you are pain patient, or a subject matter expert and you would like to contribute as a guest blogger, please feel free to email us, and we will be happy to collaborate with you.

Thank you for supporting Pain Advocacy Coalition #ShareOurPain blog.

We hope you will find useful information here that will bring unity to the pain community to act cohesively and add value to the national/ state/ local conversation.

We hope our contributions will assist the pain community to collaborate to protect access to effective, cost effective treatment for pain, and we look forward to hearing from all of you on different topics that you would like to see us address.

Do you have testimonial about how this website empowered you as an eAdvocate to address the issues the pain community is facing?

What other topics would you like to see addressed on this blog?

Leave us a comment under the blog posts!

 

 

 

 

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Call to Action

The following information will empower the pain community to build a solid foundation to collaborate and advocate effectively utilizing collaborative tools to change the social environment and the changes in healthcare that are negatively impacting pain patients.

We will empower our pain community with tools to advocate, thus leveling the playing field that many of us have not had access to in the past. We will encourage everyone to take their advocacy efforts to the next level by bringing creativity, technology and progressive ideas to fruition. By empowering everyone to eAdvocate, our chances of success as a community, will multiply exponentially.

The following information is for everyone in our community. No one can do this alone. It takes a community. If everyone takes on one task, the job will get done! That’s collaboration 101! Maybe you blog, or text, or you research, by offering your gifts, there’s something here for everyone to contribute to.

If you are concerned about cost, many applications and social media platforms are free with options to upgrade. You can always add bells or whistles later, as you scale up. However, if you are creating a grass-roots movement, like many of us are, free is good.

Free is very, very good!

Many collaborative tools and social media platforms are now more accessible and user-friendly with available online tutorials to utilize as resources.  There are many communities and help forums to assist you. If you are diligent you can master the tools, and now you can also ask questions and share tips here.

This web page will highlight and introduce:

  • social media guidelines
  • social media philosophy
  • collaborative tools
  • social media platforms
  • social media strategy

to assist you take e Advocacy action effectively, safely and help you to amplify your message to your intended audience. The pain community will “be silent no more” and as one wise and infamous pain patient said…..

“It’s not a conversation about us, without us!”

 

Conversation
Image Credit: giphy.com

 

 

 

 

 

 

 

So, let’s get that conversation started!

Due Diligence

The first rule of social media is to “do your due diligence” on the “front end” to build a solid foundation, so you don’t have complications on the “back-end.”

If you are an advocate for the pain community, we are all relying upon you to represent us. Prior to taking action, lay a solid foundation, by instituting the following suggestions.

Check out the “10 Laws of Social Media” philosophy to build a solid foundation.

 

Video Credit: entrepreneur

 Building a Foundation

To build a solid foundation for the success of your eAdvocacy group begin by:

  • researching and becoming informed
  • listening to the conversation
  • refraining from contributing until you have built a foundation
  • absorbing what the trends are in “real-time” or as they happen
  • determining who your audience is
  • identifying who the “influencers” are in the pain community
  • following the “influencers” impacting your issue
  • building a tribe of “like-minded” individuals who share your common values/ goals
  • defining your mission collectively as a group
  • defining “deal breakers”that might jeopardize the group
  • gaining consensus from your group on a plan of action, based on your mission, after you have established your foundation
  • formulating a plan based on  “research, current trends, issues and conversations”
  • delegating tasks based on your mutually agreed social media strategy
  • identifying each members strengths and skill set
  • cross training and coaching group members to carry out tasks
  • volunteering for tasks to stretch your skill set
  • offering support to members tackling new tasks
  • assigning members to build new social media platforms to expand your reach
  • implementing your action plan to amplify your message
  • collectively considering your success/ failures as a group
  • re-assessing your strategy based upon successes and failures
  • assessing and providing resources based on trust
  • engaging individuals or institutions, who might not share your point of view, to dialogue about your cause
  • thanking your contributors, supporters and detractors
  • assess, plan, implement, and  re-evaluate

With that framework in place, check out these collaborative tools that will help you to realize your goals.

If you can master Facebook, search the help pages, conduct Google searches, go to YouTube to find a tutorial, you are well on your way to mastering collaborative tools.

Collaborative Tools

To begin researching and listening to the conversation, develop and implement these crucial tools. Here is an overview of what eAvocacy looks like utilizing collaborative tools and hashtags.

Video credit: Richmond YOT

Here are some up to date dashboard tools to monitor trending hashtags.

Below, check out some more tools to track the conversation and gather information for your audience.

Google Alerts

As we mentioned earlier, listening to the conversation is collaborative tools 101. Google Alerts is a great tool to monitor content on the web. Enter key search words or terms and an internet bot will go out and retrieve the content you are following. Set up your alerts according to your specific needs whether that is following federal/ state legislation or following individuals/ agencies. Google Alerts will email the content you need to your email address according to the schedule you set up.

It is imperative that you use articles and research to help define the issue and drive the narrative or dialogue. Commentary is warranted, and questions should be posed, but they should always directly align with the facts that you have discovered in previously published material.

That’s not to say witty banter is not a valuable tool! More on that later!

Basing your campaign on facts can’t be emphasized enough. Twitter etiquette requires in most cases,  that you should include a link with your statement.  Everyone on Twitter wants the facts, please! Making statements or accusations without basis, is a great way to find yourself accused of slander.

We recommend sticking to the facts when and wherever possible.

Proton Mail

Proton mail is a secure  encrypted email service. Group members should consider using a secure email service. Proton mail is free, but they also offer options to upgrade. Some options are limited, but overall it’s a great tool to collaborate. Encryption is only guaranteed if both parties are using encrypted mail services.

Twitter

Open a Twitter account, you will be glad you did. This is where the conversation is happening, in public, in “real time” and this is where you can bring transparency to your cause.

If you are following the Pain Advocacy Coalition #ShareOurPain initiative, consider opening a Twitter account with the handle shareourpain and your abbreviated state.

For example, it should look something like Sheila @shareourpainTX

Once your Twitter account is established, follow other hashtags by searching for key words in the Twitter search bar and begin:

  •  creating/ joining lists that relate to your specific cause
  • identifying influencers who have large followings
  • identifying influencers who are actively tweeting
  • identifying groups and institutions who share your point of view
  • engaging influencers and others who might not share your point of view
  • establishing a direct message chat room with other trusted Twitter supporters
  • assisting your group to collaborate internally by creating a unique hashtag to tweet under
  • build alliances with other Twitter tribes
  • consider following lists, or creating lists of the accounts you seriously need to know they are tweeting, it will create a separate stream of tweets with only the accounts you designate to appear
  • add a hashtag  to your tweets and re-tweets that are trending nationally so that the public sees your tweets, otherwise you are in an echo chamber all by yourself
  • along with hashtags that are trending, be sure to use hashtags that the pain community are using frequently to keep them in the loop

Remember to always listen first,  begin by following those accounts that relate to your cause, then contribute when you can add value to the conversation.

Here are some tips on elements that you may want to include in your tweets to be successful. If are not familiar with how to compose a “proper”Tweet this is a down and dirty review with screenshots that will show any novice how to compose a Tweet from a basic template format.

Hootsuite Social Media Management explains “How to Write a Tweet to Increase Twitter Engagement.” 

Now that you are tweeting quality tweets, keep a few more details in mind:

  • Aim your tweets strategically at trending hashtags to raise awareness with the public.
  • Use hashtags strategically to share, inform, support other groups within the pain community that you are building alliances with.
  • Direct other tweets to trending hashtags coupled with your unique hashtag to raise public awareness, dialogue to build consensus, or inform individuals, agencies and institutions influencing the issue you are addressing.
  • Use Twitter analytics to evaluate the success of your tweets.
  • Use Hashtagify.com to identify corresponding trending hashtags and top influencers.

Begin a direct message chat room to discuss your cause. Invite Twitter users who are engaged in your cause. Build consensus within the group. Prepare to extend your mission to other platforms with additional valuable tools.

Set some goals with the group, and then collectively tweet about issues that matter to you. Find public tweet chats and meet collectively to tweet in unity to support your cause.

Direct your tweets strategically to your audience, so you do not find yourself in an echo chamber, talking to yourself, or to people who are already aware of the issues. You want to inform your community, but most importantly, you want to raise public awareness.

Refrain from slander, abusive language, or shocking images. You are interested in engaging in dialogue and raising public awareness by illuminating the facts from your research.  With that said, please apply witty sarcasm, memes, pointed questions and humor liberally!

See one, do one, teach one.

Coach members of your group for the next phase of your eAdvocacy. Your efforts should be directed at identifying appropriate group members to help you expand your mission. Tasks are on a voluntary basis reliant on merit and contributions to the group. Not roles or titles but passion, loyalty, ability to think critically, yet still follow guidance and having no end to elbow grease are valuable traits. Everything else can be taught and mistakes can be corrected mid-course.

Remember, unless you are physician or healthcare provider, we don’t recommend offering medical advice due to liability. If you are, or someone you know is in a medical crisis, you should devote your efforts towards resolving that critical issue.

All group efforts and dialogue should remain focused primarily on advocacy. Other personal issues should be taken to direct message for the sake of the group and to maintain productivity.

For more information on collaborative principles, check out the Collaboration menu for more details.

If you are ever in doubt, or when you are ready to expand your Twitter capabilities, be sure to refer to Twitter help as a useful resource.

Trending Topics

It’s important to understand which topics are trending and why, then you can effectively combine your tweets for your cause with trending topics on Twitter. Check out this video for more information.

Advocacy Through Social Media: Why Trending Topics Matter | Karen McAlister | TEDxUTA

Video Credit: Tedx Talks

Now, we can add the #ShareOurPain hashtag to the hashtags that are related to human rights, discrimination and marginalization.

Remember, it means a great deal to those who are oppressed to know that they are not alone. Never let anyone tell you that what you are doing is insignificant. Desmond Tutu

Hashtagify

Hashtagify helps you master hashtags far more quickly and will enhance your social media performance on Twitter and Instagram. This website will help you amplify your message, identify influencers, extend your reach, dialogue with your intended audience, track your competitors and help you make smarter decisions.

Now that you have set these suggestions into motion, hopefully your Twitter group has grown, you have collaboratively defined your mission, and your group is ready to broaden their horizons and take your eAdvocacy efforts up another notch.

Slack

Slack is a platform that connects teams with the apps, services, and resources they need to crowdsource a problem. Crowdsourcing can be done anytime, anywhere  and it can be according your ability to participate. If you can read for 10 minutes and offer a an insight to a problem, you can crowd source.

Launched in 2014, Slack is the fastest growing business application in history.

Slack does require a little bit of learning curve, but it is worth the effort. You can invite the core members of your group to Slack to coordinate your social media strategy. You will be able to set up an organizational space available 24 hours/day without having to hire a project manager. People can come and go a they please or in our case, when they are able.

You can create channels that narrow your topics down, allowing sub-groups to form, and address specific issues or tasks.

On Slack you have the ability to:

  • hold conferences utilizing Google Hangouts
  • screen share during Google Hangout sessions
  • share images and documents directly on Slack
  • utilize Google tools and a host of other applications
  • implement Skype for more user-friendly conferences
  • assign tasks and monitor
  • direct message group members for one-on-one conversations
  • create a channel to hold group chats
  • create separate channels to address individual topics
  • poll the group for consensus on ideas or decisions that involve the group

There are many other applications that you can download to your Slack platform to meet your group’s needs. If you can download an app to your phone, you can learn how to master the applications on Slack.

Next Level

Now that you have mastered Slack, you can seriously start tracking issues in your state or on a federal level. Consider utilizing LegiScan to follow legislation in your state and respond accordingly.

LegiScan

While you are taking your advocacy to the next level, track what is going on in your state/ federal legislation and advocate accordingly. In 2018, there is rush to introduce ever increasingly stringent healthcare policies that is having a negative impact on the pain community. In addition, third-party administrators are dictating even more stringent restrictions to healthcare providers. We anticipate that in 2018, this tool will become even more valuable to pain advocates everywhere.

“LegiScan launched to support the release of the national LegiScan data service, providing the nation’s first impartial real-time legislative tracking service designed for both public citizens and government affairs professionals across all sectors in organizations large and small. Utilizing the LegiScan API, having over 10 years of development maturity, allows us to provide monitoring of every bill in the 50 states and Congress. Giving our users and clients a central and uniform interface with the ability to easily track a wide array of legislative information. Paired with one of the country’s most powerful national full bill text legislative search engines.”

In the pain community, our cause, will likely be fought at the state level in 2018.

It’s imperative that we act quickly. It’s going to be an uphill battle.

We hope to see the pain community launch their own advocacy campaigns like #ShareOurPain in each individual state to derail current legislation, or propose new legislation advocating for ongoing future protections for pain patients and pain management physicians everywhere.

For more information on advocating for pain patients state by state check out this resource.

The State Pain Policy Advocacy Network

Get Informed.
Find the latest updates on state pain policies, easy-to-read analyses, and learn about SPPAN’s 2017 Policy and Advocacy Priorities.  Also, view our End of Session report showing 225 pain-related bills which passed into law in 2015.

Get Connected.
Learn how you can join with others in your state to advocate for pain care policies that ensure access to effective and comprehensive care for all people with pain.

Take Action!
Get the information, tools, and resources you need to be an effective advocate.

Going All The Way

Now that you have come this far, you might as well cross the finish line! Consider starting a blog, a website, a public Facebook page, YouTube page and an Instagram account to augment your message to reinforce and complement what you have created.

It is important to provide a consistent message to your audience across your social media platforms, You can achieve this by connecting all of your social media platforms together on a WordPress blog or website. So that when you publish a blog post, it will automatically post to your social media platforms as well making your life easier!

WordPress

WordPress is a user-friendly content management system that allows you to publish a website, a blog or both.

There are many resources out there to learn WordPress. You can find tutorials on YouTube and WordPress.com

WPBeginner is one of the most user-friendly resources for guidance online.

If you are a novice, you may want to start out with a blog that informs your group, community and the public about your advocacy campaigns and how they can participate in your call to action.

WordPress offers options to set up a free blog and website. If you want to have a lot of options, you will need to upgrade your site. The staff at WordPress are phenomenal and happy to assist and there is a large WordPress Community to interact with for support.

Here are some WordPress tutorials to get you started.

The idea is to funnel your tribe from smaller platforms such as Twitter and Facebook over to your blog/ website a a central hub for more in-depth information and active participation.

Consider your blog or website your “central hub” to provide more information for your audience.

At the same time, you can customize the content you create on WordPress into posts that you can also share on other platform by connecting the platforms together.

An important part of amplifying your message effectively is using images to communicate consistently your brand regardless of what platforms you are using.

Remember to try to maintain visual consistency between each platform, so your audience remembers you and can find you easily.

You can do this by creating logos, memes and images that are visually consistent with your brand.

Here are a couple of tools to help you obtain images without getting yourself into a copyright cat fight.

Images

Images can be hard to find and expensive. Your best bet is to begin with free images. Remember to add an image credit if you are using any other image that you have not personally created.

logomakr

This is a great website to create an informal logo for your cause.https://logomakr.com/

 

Pixabay

Pixabay is wonderful source for free images if you are on a budget. There are many other websites out there that you can purchase images from, but we recommend starting out with free images. Always document where your images came from by giving image credits. Using other people’s images without their express consent could land you in copyright infringement suit. So, try to use free images, images you paid for or images you created.

Giphy

Create humorous or even pointed memes for your content or download content that other people have created.

Navigating Safely Online

Should you ever feel that you are on shaky ground regarding freedom of speech or copyright law, we recommend that you do not take risks if you are unsure or unprepared to handle the outcome.

Please follow-up with a subject matter expert before you take action.

Here’s a quick refresher on “The First Amendment and Freedom of Speech Online.”

Freedom of Speech: Crash Course Government and Politics #25

Speaking of attorneys, a terrific resource for online advocates to follow is Ruth Carter’s blog, a social media attorney and visionary for advocacy utilizing social media and collaborative tools.

Check her out! She is a force to be reckoned with and a social media pioneer, her book “The Legal Side of Blogging: How Not to get Sued, Fired, Arrested or Killed” is a definite must read!

eAdvocacy in the Digital Age

There is no reason to re-invent the wheel, now that you are well on your way to advocating using collaborative tools. One of the best resources online offering precise guidance on how to implement direct action with collaborative tools can be found on the Community Tool Box website. There you will find more inspiration and guidance for directing your campaigns utilizing social media from writing a letter to your legislator to organizing a boycott.

We will also be highlighting our call to actions and efforts under the #ShareOurPain Portfolio.

Now that you are armed with some collaborative tools, we should remind everyone that these kind of projects grow organically, in their own time, and require the contributions of a village to accomplish. They do not happen overnight. They can not be attributed to one person.

Many people people contributed to this project on a small level to bring it fruition and only when they were able to read an article or send a tweet, but momentum grows with unity and trust.

We hope this information will help you and your team to expedite your cause, but there is something to be said for patience, proceeding with caution, exercising good judgement, and allowing things to unfold at their own pace.

A word of wisdom, don’t put the cart before the horse!

There will always be bugs and bumps in the road to throw you off course, but stay diligent and focused, refuse to go down any time-sucking rabbit holes, focus on what you’re accomplishing and not how hard it is, and every day, you will see progress and gain victories over your obstacles!

Besides, isn’t that what bug spray, seat cushions, duct tape and seat belts are for?

Other Resources

There are so many other resources out there!

We hope you will log into our forum to share your advocacy tips with the pain community or please share your latest eAdvocacy action on our Testimonials page.

If these tips have been helpful to you, or if any of this information on this website has enabled you to empower yourself as a pain patient advocate, please email us your testimonial. Send us screenshots and share your advocacy journey with us. Please add any information you believe will benefit the pain community to empower themselves through collaborative tools and  social media platforms.

Until, then we hope to see you frequently on #ShareOurPain website, blog, Twitter, Facebook and YouTube pages!

Go Live

Congratulations, now that you have implemented these social media platforms, together or separately, now your are ready to “go live!” Edit your material so that it is easy for the audience to find what they are looking for.

Recycle your content in a newsletter for those people who couldn’t make it to your website or social media platform. Check to make sure all your links and pages are visible, and all of your platforms are connected. Be certain your followers can share your content.

Get ready to tell your audience what you are going to tell them, then tell them, and then tell them that you told them.

Remember, to many cooks will spoil the pot and not enough dishwashers, will never get the job done!

The pain community is doing a great job. We just need to amplify our message! We need our community to take full ownership of our healthcare options and make our message very loud and very clear! Thank you for your eAdvocacy on the behalf of the pain community.

Please feel free to shout out any questions, and we will try to oblige!

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Collaboration

Creating a Collaborative Environment

Today, many of us find ourselves in the age of information, technology and collaborative tools. As a result, we also discover that there has been a paradigm shift in the approach to solving common problems. How has crowdsourcing offered us an “opportunity to re-think and re-invent conventional processes?”

Buzz words like “crowdfunding, transparency, remaining fluid, adding value, subject matter experts, merit, transparency and contributions” have become terms associated with using collaborative tools. With that said, the purpose of this web page is to examine some ideas about how we can effectively crowdsource a common problem utilizing collaborative tools. We will also compare and contrast how collaborative tools have disrupted traditional leadership in favor of collaborative leadership.

Crowdsourcing

Let’s take a closer examination of the term “crowdsourcing,” and what it means to “crowdsource” a common problem.

Below is a brief explanation of “crowdsourcing” by crowdsourcingweek.com titled “What is Crowdsourcing?”

The article states:

Crowdsourcing is the practice of engaging a ‘crowd’ or group for a common goal — often innovation, problem solving, or efficiency. It is powered by new technologies, social media and web 2.0.10. Crowdsourcing can take place on many different levels and across various industries. Thanks to our growing connectivity, it is now easier than ever for individuals to collectively contribute — whether with ideas, time, expertise, or funds — to a project or cause.

The collective mobilization to solve a common problem is crowdsourcing.

A Paradigm Shift

The article goes on to expand on the concept of crowdsourcing by stating:

“This phenomenon can provide organizations with access to new ideas and solutions, deeper consumer engagement, opportunities for co-creation, optimization of tasks, and reduced costs. The Internet and social media have brought organizations closer to their stakeholders, laying the groundwork for new ways of collaborating and creating value together like never before.

The future is human-centric, all about participation and the ability to co-create via an increasingly connected world. This new way of doing things – crowdsourcing, crowdfunding, co-creation, collaboration, and open innovation – is challenging business models and workings of organizations across the board, offering an immense opportunity to rethink and reinvent conventional processes.”

Traditional vs. Collaborative Leadership

So, how has collective problem solving evolved in the age of information, technology and collaborative tools?

How has crowdsourcing offered us an “opportunity to re-think and re-invent conventional processes?”

In the article, “Between Traditional and Collaborative Leaders” posted by jartese on Nov 8th, 2013 on blog.innocentive.com  the author describes in more detail how a collaborative environment differs from a traditional business or work setting by stating:

Power

Traditional Leaders: The traditional corporate approach to power is one of singular authority. Traditional leaders in the corporate world believe that their power derives from their position of authority. Old school corporate hierarchy often bestows power based on longevity with a secondary look at prior results. The longer you stay with your firm, the farther up the ladder you progress, the greater your power.

Collaborative Leaders: The new approach of collaborative leadership recognizes that power is greatest in a collective team. By encouraging equal participation across all levels, collaborative leaders allow solutions to develop from the best ideas of the group and take a team approach to problem solving.

Information

Traditional: Maintaining ownership of information is the hallmark of traditional leaders. From a power perspective, information is power. Releasing information on a “need to know” basis allows traditional leaders to maintain authority and control.

Collaborative:  Open information sharing is the cornerstone of collaborative leadership. Getting everyone on the same page in a project requires information sharing. Education also plays a role. The more cross training available, the more creative approaches to problem solving can develop and be implemented.

Idea Generation

Traditional:  Traditional managers will occasionally entertain suggestions or be open to ideas from their team.  In a top down hierarchy, the decisions generally come from the executives at the top of the food chain. Because information is closely held, management may know of circumstances that drive the decision-making process that may be withheld from team members.

Collaborative: The art of collaboration gives everyone on the team a voice. Leaders are generally open to suggestions and ideas from their team and recognize that brainstorming and different perspectives can bring unique insights.

Problem Solving

Traditional: In a traditional corporate culture, solutions are generally delivered to team members. These decisions are made in the boardroom or the executive suite, approved and passed on.

Collaborative: In a collaborative environment, solutions are brainstormed among team members and facilitated by management. Collaborative leaders recognize the power of a group approach to problem solving.

 Resource Allocation

Traditional: The traditional approach to resource allocation is generally reactive. Resources are provided only when deemed necessary by upper management and often brought to a committee for approval prior to deployment. This process takes time and focus away from a project and can result in stress being placed on the team by forcing them to deal with issues or challenges without the necessary resources.

Collaborative: A collaborative environment is based on trust and resources may be delivered proactively. Team leaders will enable their teams to flourish by providing resources and allocating time, quickly. This allows projects to develop more rapidly, as employees have access to the corporate resources (time, money, materials) necessary to do their jobs efficiently.

Rules and Responsibilities

Traditional: Traditional corporate culture relies on a series of rules, regulations and a hierarchy that force managers and team leaders to adhere to specific roles and responsibilities for both them and their teams. This can stifle the creative process and result in team members working in relative isolation as information and resources are shared and provided on a “needs” basis.

Collaborative: In a collaborative environment teams are encouraged to work together. Information, resources, knowledge, time and effort are shared. This allows roles and responsibilities to evolve and fluctuate based on the greater good.

Resolving Issues

Traditional:  In a traditional culture issues are often dealt with on an individual basis with no regard to the root cause of the problem. This keeps managers fighting fires instead of instituting beneficial change that could prevent issues from arising.

Collaborative: The basis of collaborative leadership is trust. Because team members are given more responsibility for their work, leaders are often more involved in the process. This means that as issues arise they are often dealt with swiftly. Collaborative leaders look for the root cause of conflict as it arises, and address solutions promptly to keep work moving forward.

Performance and Feedback

Traditional: Most traditional corporations practice a semi-annual or annual review process based on corporate policy. This can be detrimental to employee morale. If an employee has had a banner year, but in the last month missed a deadline or a project they were managing ran over budget, it can result in a negative performance review. This can damage morale and increase turnover as employees who feel they were unfairly judged may seek greener pastures elsewhere.

Collaborative: The nature of a collaborative environment means that leaders and team members are equally valued and work closely together on a daily basis. This gives the opportunity for immediate feedback, praise and constructive criticism. A collaborative environment is nurturing and offers the opportunity to share knowledge and educate members on an ongoing basis. Collaborative leaders often share their knowledge and experience by offering ongoing personalized coaching to other team members.

Here is a great info-graphic summarizing the collaborative approach.

 

Collaboration

Infographic credit: blog.innocentive.com

 

Check out this table for a summarized explanation for easy reference.

Table 1 Traditional Leadership vs. Collaborative Summary

Traditional vs. Collaborative Traditional Business Model Collaborative Leadership Model
Power Distribution Singular authority Collective leadership
Structure Hierarchy Equal participation
Leadership Vertical leadership Horizontal Peer 2 Peer leadership
Information Information ownership Open sharing
Control Need to know basis Open access
Roles Traditionally defined roles Cross training
Role Value Assigned a value Equal in value
Idea Generation Top to bottom, vertical idea process, closed  dialogue P2P brainstorming, horizontal equality among co-contributors, contributions widely solicited
Problem Solving Vertical hierarchy/ closed dialogue Horizontal hierarchy/ open dialogue
Directives One-way, does not require consensus Multi-directional, builds consensus
Tasks Assigned Volunteer
Feedback Annually, bi- annually Focus: success/ failure of the individual Real time, Focus: success/ failure of the group goals
Conversation Intermittent,

One way

Ongoing,

Multi-directional

Expertise Relies upon hierarchical guidance or leadership Relies upon self-development, P2P mentoring, wisdom of the crowd, access to  resources or Subject Matter Experts (SME)
Resources Allocated as proven necessary Allocated based upon trust
Responsibilities Well defined Fluid and evolving
Conflict Resolution Individual cause vs. root cause Root cause vs. individual cause

Table Credit: Pain Advocacy Coalition

The Doctrine

The doctrine of non–traditional collaborative problem solving supports innovation by helping to bring people together from different backgrounds, values, and skill sets to effectively come together and tackle a common problem primarily by utilizing trust. When you have coalesced your group on a collaborative platform, you will want to incorporate the philosophy of collaboration.

The philosophy of collaboration requires a foundation of trust and entails empowering everyone in the group to agree that the “wisdom and contributions of the crowd” will:

  • develop consensus and make the best decisions for the group and the community
  • define short and long-term goals and take appropriate action by soliciting group consensus
  • dialogue for the best outcomes to a problem, with the best ideas floating to the top
  • self-police for the benefit of the group or reach out to an administrator if there is an obstacle
  • consult with subject matter experts in the event there is no consensus in the group
  • foster an environment where everyone’s contributions are valued
  • foster recognition of a group’s contributions for victories vs individual recognition
  • permit subject matter experts to emerge as leadership naturally based on merit and contributions
  • assign tasks based upon “merit” and “adding value” which includes being in the trenches, creating value through contribution consistently vs. titles and roles
  • foster an environment of creativity, autonomy within specialized groups
  • discourage a system that requires an approval from one person for all actions or bottlenecks good ideas
  • invest in the members of your group by cross training, take time to teach others (see one, do one, teach one)
  • focus on your immediate area of expertise/ learning and permit others to do the same
  • refrain from making any determinations of success or failure in a group you are not diligently participating in
  • read each group’s goals and review any threads before joining or contributing to a conversation
  • welcome new members, as they informally introduce themselves, assist them to find their “niche” and help them to identify their role within the collective group

Through equanimity, we can offer a democratic environment that is conducive to others joining our ranks, contributing their gifts or talents and gaining traction as a grassroots movement.

We are all contributing to achieve a common goal. No one has to participate. We are here because we want to create a viable solution. When collaborating, we see a need, and we address that need together.

Many of us have other obligations, health issues, or projects that require our time, effort and resources. The flexibility of collaborative tools permit us to overcome those obstacles.

The nature of crowdsourcing naturally brings people together from different backgrounds, skill sets, values, beliefs and geographical locations and even time zones to effectively manage and address problems.

Crowdsourcing never stops because people have access to collaborative tools 24 hours/ day, 7 days/week and 365 days/year.

The good news is that crowdsourcing is flexible for everyone’s needs, regardless of barriers.

Collaborative Advantage vs. Inertia

While there are a lot of positive aspects to collaborative groups and crowd sourcing a common problem, things can get bogged down through inertia.

Here is an excellent video by Matthew Koschmann, a professor in the Department of Communication at the University of Colorado Boulder. The purpose of this video is to explore the topic of collaboration and explain a constitutive communication approach to enhance our understanding of collaboration to avoid pitfalls associated with a collaborative setting.

 “The Collaborative Challenge: Making Quality Decisions Together in the Age of Complexity”

How to “remain productive” in a complex collective setting by avoiding collaborative inertia.

Building Tribes

If you have made it this far, then you are a “true collaborator!”

Congratulations!

We can’t end this conversation, without referring to the man who originally coined the phrase “building tribes” and literally started a collaborative revolution.

If you really want to “harness the power of the crowd,” then all the information and work that is completed on a collaborative tool, must be disseminated.

This means we all need to explore how to “build tribes.”

Seth Godin, tribe extraordinaire explains more about collaboration and how to build tribes!

“The Tribes We Lead!”

Video Credit: Seth Godin

For more information on how to collaborate, consider joining our #ShareOurPain blog to ask questions or leave comments, or join us on Twitter or Facebook.

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