One Patient’s Point of View

Patient-Centered Clinical Decision Support-Learning Network Annual Meeting October 15, 2018

Resources

Let us know if you have Organizations, Tools, Articles to add

Groups & Services

Patient Centered Clinical Decision Support Learning Network

Organization: Patient-Centered Clinical Decision Support Learning Network

The Patient-Centered Clinical Decision Support Learning Network (PCCDS Learning Network) is bringing together stakeholders to address the opportunities and challenges around dissemination of evidence-based findings through patient-centered clinical decision support (PCCDS). Its central focus is providing a forum for stakeholders to address opportunities and challenges around PCCDS.

Find website here

CDS Connect

Website: CDS Connect

The CDS Connect Repository follows AHRQ’s mission of focusing on evidence-based care, by identifying and codifying new evidence-based standards of care as CDS artifacts. These CDS artifacts address the domain of cholesterol management and are being extended in 2018 to support pain management and opioids. These artifacts will be piloted in a live clinical setting to refine and evaluate the effectiveness of the Repository and its processes around artifacts and their development. 30+ organizations and individuals participate and guide the development of the Repository through our external workgroup.

Find website here

Society for Participatory Medicine

Organization: Society for Participatory Medicine

Highlights:

Participatory Medicine is a movement in which patients and health professionals actively collaborate and encourage one another as full partners in healthcare

Find website here

The British Pain Society

Organization: The British Pain Society

The British Pain Society is the oldest and largest multidisciplinary professional organisation in the field of pain within the UK. Chronic pain is suffered by over a third of the population. It is commonly distressing and commonly highly disabling. It is devastating for individuals who suffer. Many cannot work and lose their jobs.

Treatment of pain is a fundamental human right, yet sadly there is an enormous gap between the care people require and what happens in practice. We also do not know enough about the cause and treatment of pain. Our alliance of professionals works collaboratively with patients and industry partners to advance the understanding and management of pain. We strive to reduce the suffering of people enduring daily pain.

Our multidisciplinary nature is pivotal in making The British Pain Society a uniquely relevant representative body on all matters relating to pain. The British Pain Society is a Chapter of the International Association for the Study of Pain

Find website here

American Chronic Pain Association

Since 1980, the ACPA has offered peer support and education in pain management skills to people with pain, family and friends, and healthcare professionals. The information and tools on our site can help you to better understand your pain and work more effectively with your health care team toward a higher quality of life.

ACPA Mission: To facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain. To raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain.

Find website here

The Pain Companion

Website: The Pain Companion

Are you suffering from chronic pain due to back injury, arthritis, fibromyalgia, migraines, or other chronic illness? I’ve lived with debilitating nerve pain from Thoracic Outlet Syndrome since 2007, so I understand the challenges all too well. I know how lonely and isolating it can be, and how misunderstood we often feel. On this website, I offer solace and support through practical insights, meditations, and emotional understanding through my blog posts, books, videos, and free resources. Feel free to connect and let me know what else you might like to see here.  With warm best wishes, Sarah
Find website here

Buzzy Drug Free Pain Relief

Website: Buzzy, Drug-Free Pain Relief

MMJ Labs was established in 2006 by pediatric emergency physician and pain researcher Amy Baxter. Inspired by the need to control needle pain, Dr. Baxter set out to develop reusable, physiologic products for home and hospital. Initial R&D funded by the NIH launched the flagship product Buzzy®, a palm sized device combining cold and vibration. When placed “between the brain and the pain”, the competing stimuli can eliminate or inhibit pain.

Since the official product launch in 2009, Buzzy® has been used by over a quarter million patients. Buzzy is in over 5,000 hospitals and clinics, with 75,000 units sold. With multiple patents and FDA 510 clearances for controlling pain from IVs, blood draws and cosmetic injections, muscle injury and myofascial trigger point pain, the company has broadened the product line to include VibraCool Sport Therapy and DistrACTION®products.

Find website here

Salem Oaks

Organization: Salem Oaks

Committed to working with patients, their advocates, biopharmaceutical companies, regulators and other stakeholders to develop educational tools that help patients bridge the gap between themselves and Biopharma R&D.

Find website here

Center for Healthcare Innovation

Organization: Center for Healthcare Innovation

Highlights: 

The Center for Healthcare Innovation (CHI) is an independent, 501(c)(3) non-profit research and educational institute that helps patients and providers increase their knowledge and understanding of the opportunities and challenges of maximizing healthcare value to improve health and quality of life.  We aim to make the world a healthier place.  CHI encourages and enables meaningful and executable innovation that aims to address existing and ensuing healthcare dynamics through communication, education, training, symposia, reports, and research.  By bringing the best and brightest healthcare leaders from all over the world together to share their ideas and expertise, CHI creates a unique opportunity to address and improve healthcare value, which we view as a function of quality, access, and cost.

  1. Bring together key stakeholders to develop collaborative relationships to positively impact healthcare value
  2. Increase understanding of the definition, framework, and metrics of healthcare value
  3. Produce primary, impactful research focused specifically on the intersection and interplay of healthcare quality, access, and cost
  4. Analyze fundamental drivers and trends of rapidly rising healthcare costs
  5. Identify and disseminate best practices for optimizing healthcare quality and access

Find website here

Blogs and Columns

Patient Engagement Tip of the Month

Blog: Patient Engagement Tip of the Month

Highlights: Geri Lynn Baumblatt coordinates and writes for this blog

Find the website here

Health Hats

Blog: Health Hats

Highlights: Danny van Leeuwen – Empowering people as they travel together toward best health. Use search terms: Caregiving, caregiver to find relevant posts

Find the blog here

Articles and Blog Posts

Attacking the Opioid Crisis on a Budget

Article: Attacking the Opioid Crisis on a Budget

Highlights: Political talk is cheap, substance abuse programs are expensive, and the nature of the crisis demands fast action. Sadly, while an official ‘public health emergency’ declaration helps, it doesn’t give a quick infusion of cash to help embattled front line substance abuse workers. To allocate funds, the Health and Human Services (HHS) budget (that currently cuts $4B in funding) must be revised so that Congress has funds to allocate. As it looks like the crisis will continue to be fought on a shoestring, in addition to immediate definitional changes to access existing funds, it’s time to get the biggest bang for addiction intervention bucks: prevention innovation.

Find article here

Communication at Transitions-One Audacious Bite at a Time

Article: Communication at Transitions-One Audacious Bite at a Time

Highlights: Written by Danny van Leeuwen in the Journal of Participatory Medicine. our health journey is teams of people at the center of care taking such actions to provide healthcare and service to us. During this journey, we transition from one setting to another, from one team to another, repeatedly. Communication knits this maze of actions, interactions, and transitions together. At its core communication is two or more people or parties sharing some information via some channel (voice, paper, digital, dramatic), one time or several times in a particular setting, hoping to accomplish something that moves us along in our health journey.

Find article here

Putting Patients at the Center of Pain Management Decisions

Blog post: Putting Patients at the Center of Pain Management Decisions

Clinical decision support (CDS) researchers, developers, and implementers: Consider the patient perspective in making choices about pain management and opioid use CDS.

Find post here

Noninvasive Non pharmacological Treatment for Chronic Pain: A Systematic Review

Article: Noninvasive Nonpharmacological Treatment for Chronic Pain: A Systematic Review

Published by the Agency for Healthcare Quality and Research (AHRQ) in their Effective Health Care Program page. To assess which noninvasive nonpharmacological treatments for common chronic pain conditions improve function and pain for at least 1 month after treatment.

A comprehensive 1400 page book. Pretty amazing resource.

Find the book pdf here

Alternative health treatments that work

Article: Alternative health treatments that work

Done anything alternative lately? If so, you have a lot of company. When we surveyed 45,601 Consumer Reportssubscribers online, we found that three out of four were using some form of alternative therapy for their general health. More than 38 million adults make in excess of 300 million visits to acupuncturists, chiropractors, massage therapists, and other complementary and alternative practitioners each year in the United States.

Despite the hoopla over alternative treatments, when we asked respondents how well the therapies they used worked for 12 common health problems, results showed that they were usually deemed far less helpful than prescription medicine for most of the conditions.

Even widely used dietary supplements ranked far below over-the-counter medications in many cases. But hands-on treatments such as chiropractic and deep-tissue massage, as well as the mind-body practice of yoga dominated the lists of helpful alternative treatments for discomfort from conditions such as back pain, neck pain, and osteoarthritis.

Find article here

Stanford researchers: The secret to overcoming the opioid crisis may lie partly in the mind

Article: Stanford researchers: The secret to overcoming the opioid crisis may lie partly in the mind

Most people – including most physicians — think of pain as a physical symptom, but science reveals that emotions also play a big role. In other words –  psychology is integral to the pain experience, and it can make it better or worse.

When pain is treated solely with medications, only part of the problem has been addressed. Meanwhile, patients may receive too little of another kind of pain care, one that teaches them self-management techniques for treating pain. Our scientific research in the growing area of pain psychology shows that pain relief is more effective when you address the body and the mind.

Find article here

Engulfed in Opioid Deaths, Ohio Turns to Science

Article: Engulfed in Opioid Deaths, Ohio Turns to Science

Scientific American says: Last year Ohio poured nearly $1 billion into fighting the crisis through prevention, treatment and law enforcement. But the state keeps surpassing its own grim statistics. Exasperated, local authorities have begun confronting the disaster from another angle—technology. In May the state signed off on Gov. John Kasich’s request to invest $20 million in accelerating high-tech scientific measures to address the situation. Universities, hospitals and medical device manufacturers are now vying for grant money with proposals that include implantable therapeutic meshes and systems that deliver electric nerve jolts.

Find article here

Words Matter When Talking About Pain With Your Doctor

Article: Words Matter When Talking About Pain With Your Doctor

If you’re in the hospital or a doctor’s office with a painful problem, you’ll likely be asked to rate your pain on a scale of 0 to 10 – with 0 meaning no pain at all and 10 indicating the worst pain you can imagine. But many doctors and nurses say this rating system isn’t working and they’re trying a new approach.

Find article here

The numeric pain scale may just be too simplistic, says Dr. John Markman, director of the Translational Pain Research Program at the University of Rochester School of Medicine and Dentistry. It can lead doctors to “treat by numbers,” he says and as a result, patients may not be getting the most effective treatment for their pain.

Session Materials

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Speaker

Danny van Leeuwen

Health Hats

Danny van Leeuwen

Owner, Health Hats

As an action catalyst, I empower people traveling together toward best health (people as patients, caregivers, parents, clinicians, direct care staff, communities, and the people that support them). I wear many hats in healthcare:

-Patient with Multiple Sclerosis
-Care partner for several family members’ end-of-life journeys
-Nurse for 40+ years
-Informaticist
-QI leader
-Husband, Father, Opa, Musician

I specialize in patient/ caregiver/ clinician/ community relationships and the intersection between technology and the health journey.

Join the Conversation

Scroll to the bottom of the page to ask me questions or enlighten me. The more the merrier!

Tools

Chronic Pain Self-Management Program

Programs: Chronic Pain Self-Management

The Chronic Pain Self-Management Program (CPSMP) is a six-week workshop for those living with chronic pain. Over the course of the sessions, participants will learn about:

*Techniques to deal with problems such as frustration, fatigue, isolation, and poor sleep
*Appropriate exercise for maintaining and improving strength, flexibility, and endurance
*Appropriate use of medications
*Communicating effectively with family, friends, and health professionals
*Nutrition
*Pacing activity and rest
*How to evaluate new treatments

Examples of chronic pain conditions are: chronic musculoskeletal pain (such as neck, shoulder, back pain, etc.), fibromyalgia, whiplash injuries, chronic regional pain syndromes, repetitive strain injury, chronic pelvic pain, post-surgical pain that lasts beyond 6 months, neuropathic pain (often caused by trauma), or neuralgias (such as post-herpetic pain, and trigeminal neuralgia), and post-stroke or central pain. The CPSMP may also benefit those who have conditions such as persistent headache, Crohn’s disease, irritable bowel syndrome, diabetic neuropathy, or those who experience severe muscular pain due to conditions such as multiple sclerosis.

Find website here

CHRONIC PAIN: A CYCLE OF STRESS AND PAIN

Graphic: 

Everyday stressors have more of an impact on the body than most of us realize. Once stressors are identified, the brain begins to put the body into a state of fight or flight, causing real, physical effects in the body.

Over time, the brain and central nervous system learn to continue to put the body into a painful state, which repeats the pain cycle.

The Curable team utilized their knowledge of modern neuroscience to visually depict the stress-related chronic pain cycle. Please note that modern neuroscientists are still working to understand all the details of this cycle, but we believe this visual will help you grasp the concept on a deeper level.

Find graphic here

The Patient Revolution

Resource: The Patient Revolution

Highlights:

Stories can inform, infect, irritate, and ignite a chain reaction that makes the status quo unsustainable. Stories are the first step in a push for healthcare that is careful and kind to each patient and community.

Our mission is to arm people to tell stories; stories about their lives, stories about their capabilities and limitations, and stories about what risks, benefits and trade-offs look like from their point of view. We want people to tell these stories in exam rooms and hospital rooms, in their communities and in the rooms where decisions get made.

Find website here

The Pain Companion

Website: The Pain Companion

The Pain Companion came out of years of feeling very isolated and alone in my pain. I wanted to offer others in a similar situation the emotional, psychological, and pain management exercises and approaches that I eventually developed for myself.

As you probably already know, being injured or ill to the point of debilitation is an incredibly intense experience. Besides feeling a certain level of shock from the trauma of having your whole world turned upside down, there are a multitude of other emotional and psychological reactions that arise. These include loneliness, confusion, loss, frustration, depression, and hopelessness.

Find website here

Curable Pain Management app

Tool: Curable Health

All three of Curable’s co-founders experienced chronic pain first-hand. The education and tools that we have packaged into the Curable program follow the same evidence-based strategies we used to recover from our own pain, including degenerative disc disease, migraine, sciatica, RSI, knee pain, and more.

Thanks to modern neuroscience research and mind-body tools for chronic pain, we have our lives back. We believe that every pain sufferer deserves access to these tools, and are passionate about providing that.

Find tool here

What Works For Pain?

Chart: What Works for Pain?

From MMJ Labs. Cure, Supplements, Physical Treatments, Mind + Body Solutions with pros and cons and strength of evidence.

Well done

FInd chart here

Care Map - Durga's Toolbox

Graphic: Care Map – Durga’s Toolbox

Care mapping is a tool and a process that I created to stay organized and communicate with my son’s care team, including teachers, friends, and family. It’s a snapshot that shows the people, people, programs and resources our family relies on to remain healthy and strong. Care mapping is an easy way to show a lot of important information without having to give a long explanation. It’s been described as a picture that tells more than a thousand words.

Find link here

Roobrik Decision Aids

Tool: Roobrik Decision Aids

Highlights: Free online decision tools to help patients and their families make difficult health and care choices with clarity and confidence.

Find website here

Health Literacy Tools for Providers of Medication Therapy Management

Resource:

Highlights: From the Agency of Healthcare Research and Quality (AHRQ) – Medication Therapy Management (MTM) is a patient-centric and comprehensive approach to improve medication use, reduce the risk of adverse events, and improve medication adherence. These health literacy tools can improve communication with MTM patients.

Find website here

Atlas CareMaps

Resource: Atlas CareMaps

Highlights: 

Caregiving happens within an ecosystem. Caregivers and the ones they care for are situated in systems of support, connected to others through networks and webs of relationships, shared experiences, and interactions.

At Atlas of Caregiving, we believe that in order to improve systems, we must first understand them. In this spirit, we’ve made it our mission to create practical tools that build on our understanding of the experiences of family caregivers while helping families and professionals better understand, and ultimately improve, their own lives. The first of these tools is the CareMap.

  • On this site, we have provided in detail  all the instructions and support you will need to draw your own CareMap.
  • On the Draw Your Own CareMap page, you will find a video that walks you through using the CareMap tool. You will also see Key Features and Tips.
  • On the Hand-Drawn CareMaps page, we have provided you video and instructions on how to draw a hand-drawn CareMap.
  • All CareMap instructions are available in Spanish, too. For the hand-drawn instructions, click here.

Find website here

Get Involved / Advocacy

iCare Team

Get Involved: iCare Team

Highlights:

  • Connect family caregivers with initiatives where their voices can be heard
  • Educate researchers, policy makers, and healthcare providers on a range of caregiving issues through thought leadership
  • Provide guidance from a “boots-on-the-ground” perspective on challenges we face across the healthcare continuum
  • Spearhead caregiver-centric pilot programs
  • Partner with researchers, policy makers, and healthcare providers to solve problems from the family caregiver perspective

Find website here

Patient Centered Outcomes Institute (PCORI)

Get Involved: Patient Centered Outcomes Research Institute (PCORI)

Highlights: PCORI’s patient-centered, stakeholder-driven approach to healthcare research not only shapes the research that we fund, but also influences changes in the culture of research more broadly.

Find website here

American Chronic Pain Association

Resource Type: Website

Thumbnail:

Since 1980, the ACPA has offered peer support and education in pain management skills to people with pain, family and friends, and healthcare professionals. The information and tools on our site can help you to better understand your pain and work more effectively with your health care team toward a higher quality of life.

ACPA Mission: To facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain. To raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain.

Thoughts:

Rich resource with Pain Management Tools: Self-Management, ED visits, Communication, etc

Links:

https://www.theacpa.org/

https://www.facebook.com/The-American-Chronic-Pain-Association-113362482021895/

https://twitter.com/TheACPA

https://www.youtube.com/watch?v=B3CjcsOtwkQ&list=PL3b5rra5yuj3oUpsjAa4oep8agYIO0buZ

https://www.pinterest.com/theacpa/

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