MHQP Resources for Empowering Patients

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MHQP Resources for Empowered Patients

Resource Type: Website

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Members of MHQP’s Consumer Health Council – experienced patient advocates and activists – have created this website to share their knowledge and insights with other patients. The site lists the tools, guidelines, and information you may need to manage your health, interact with clinicians and the healthcare system, and find answers to questions you may have. The articles and links included under each topic will help you become a more empowered and engaged patient/consumer of healthcare services.

Thoughts:

The Massachusetts Health Quality Partnership created a rich resource for patients and caregivers learning to lead as they manage their health journeys. Well done.

Links:

http://www.mhqp.org/for-patients/resources-for-empowered-patients/

http://www.facebook.com/pages/Watertown-MA/Massachusetts-Health-Quality-Partners-MHQP/244578103090

https://twitter.com/MHQP

https://www.linkedin.com/company/massachusetts-health-quality-partners

Changeful

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Changeful

Resource Type: App

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The Transformative Power of Storytelling
Changeful is a mobile, video-based, behavior change-oriented platform designed to help alleviate the high medical costs incurred by family caregivers and professional care workers.

Thoughts:

Changeful provides payers, managed care and professionals caregiving organizations with participant insights and robust, anonymized data in a customizable dashboard.

Changeful engages caregivers with storytelling videos dealing with the problems they face every day. Tailored videos provide specific, actionable information. Alerts, live coaching, and an in-app social connection platform keep them motivated and involved.

Medical content is informed by the University of Southern California Keck School of Medicine.

Links:

Recommendations for Building and Maintaining Trust in Clinical Decision Support Knowledge Artifacts

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PCCDS

Recommendations for Building and Maintaining Trust in Clinical Decision Support Knowledge Artifacts

Resource Type: Article

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The Patient-Centered CDS Learning Network’s Trust Framework Working Group (TFWG) identified core attributes for trust (“trust attributes”): competency, compliance, consistency, discoverability, evidence-based, feedback and updating, organizational capacity, and patient-centered.

Middleton B, Platt JE, Richardson JE, Blumenfeld BH. Recommendations for Building and
Maintaining Trust in Clinical Decision Support Knowledge Artifacts. Research Triangle
Park, NC: Patient‐Centered Clinical Decision Support Learning Network; 2018 Sep p. 21.

Thoughts:

An academic view of trust in creating tools to help people and clinicians make choices in clinical care

Links:

https://pccds-ln.org/sites/default/files/2018-09/TFWG%20White%20Paper_final.pdf

CDS Connect

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CDS Connect

Resource Type: Website

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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.

Thoughts:

Tackling the challenge of technology that supports the relationship of patients and clinicians as they make medical decisions

Links:

https://cds.ahrq.gov/cdsconnect

Patient-Centered Clinical Decision Support Learning Network

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PCCDS

Patient-Centered Clinical Decision Support Learning Network

Resource Type: Organization

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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. Sponsored and funded by the Agency for Healthcare Quality and Research (AHRQ)

Thoughts:

A fine collaboration of CDS stakeholders – researchers, developers, implementers, clinicians, and patients with a resource center, patient perspective blog, and education materials.

Links:

https://pccds-ln.org/

https://twitter.com/pccdsln

Patient Activation Measure (PAM)

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Patient Activation Measure (PAM)

Resource Type: Article

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Controlling costs and achieving health care quality improvements require the participation of activated and informed consumers and patients. We describe a process for conceptualizing and operationalizing what it means to be “activated” and delineate the process we used to develop a measure for assessing “activation,” and the psychometric properties of that measure.

Hibbard, J. H., Stockard, J., Mahoney, E. R., & Tusler, M. (2004). Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers. Health Services Research, 39(4 Pt 1), 1005–1026. http://doi.org/10.1111/j.1475-6773.2004.00269.x

Thoughts:

Very well done. Required reading

Links:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1361049/

Noninvasive Nonpharmacological Treatment for Chronic Pain: A Systematic Review

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Noninvasive Nonpharmacological Treatment for Chronic Pain: A Systematic Review

Resource Type: Article

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To assess which noninvasive nonpharmacological treatments for common chronic pain conditions improve function and pain for at least 1 month after treatment.
Chronic low back pain: Exercise, psychological therapies (primarily cognitive behavioral therapy [CBT]), spinal manipulation, low-level laser therapy, massage, mindfulness-based stress reduction, yoga, acupuncture, multidisciplinary rehabilitation (MDR).
Chronic neck pain: Exercise, low-level laser, Alexander Technique, acupuncture.
Knee osteoarthritis: Exercise, ultrasound.
Hip osteoarthritis: Exercise, manual therapies.
Fibromyalgia: Exercise, CBT, myofascial release massage, tai chi, qigong, acupuncture, MDR.
Chronic tension headache: Spinal manipulation.

Thoughts:

Most effects were small. Long-term evidence was sparse.
There was no evidence suggesting serious harms from any of the interventions studied; data on harms were limited.

Links:

https://effectivehealthcare.ahrq.gov/topics/nonpharma-treatment-pain/research-2018

The Pain Companion

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The Pain Companion

Resource Type: Website

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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.

Thoughts:

Comprehensive, accessible, vetted

Links:

https://www.thepaincompanion.com/

https://www.facebook.com/thepaincompanion

https://www.youtube.com/channel/UCJ9F7KcLrkZRWLVtseDnA3Q

Alzheimer’s Reading Room

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Alzheimer's Reading Room

Resource Type: website

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‘The Alzheimer’s Reading Room is the number one source of high quality expert information for the entire Alzheimer’s and dementia communities. The goal of the Alzheimer’s Reading Room is to help everyone to better understand, cope, and communicate with a person living with dementia. The Alzheimer’s Reading Room Knowledge Base is searchable and contains more than 5,000 articles. These articles were written to answer questions, and provide solutions to the problems that caregivers face in Alzheimer’s and dementia care.

Thoughts:

Rob DeMarco’s constantly updated website provides an easily searchable repository of resources about Alzheimers and dementia. Articles are vetted and usable. I’ve never seen better. Wish I had moire time to browse.

Links:

https://www.alzheimersreadingroom.com/