Society for Participatory Medicine

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Society for Participatory Medicine

Resource Type: Organization

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

Thoughts:

Great networking for people who want to drive their own train

Links:

https://participatorymedicine.org/

https://twitter.com/S4PM

https://www.facebook.com/groups/participatorymedicine/

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

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

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

Resource Type: Article

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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.

Thoughts:

Accessible article about the mind-body relationship of pain. Works for me.

Links:

https://www.washingtonpost.com/news/inspired-life/wp/2017/09/12/stanford-researchers-the-secret-to-overcoming-the-opioid-crisis-may-be-all-in-the-mind/?noredirect=on&utm_term=.7693c0f58fb7

Noninvasive Nonpharmacological Treatment for Chronic Pain: A Systematic Review

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Noninvasive Nonpharmacological Treatment for Chronic Pain: A Systematic Review

Resource Type: Book

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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.

Thoughts:

A comprehensive 1400 page book. Pretty amazing resource.

Links:

https://effectivehealthcare.ahrq.gov/sites/default/files/pdf/nonpharma-chronic-pain-cer-209.pdf

CDS Connect

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cdslogo

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

By
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

WellBrain

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WellBrain

Resource Type:

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We are a physician created and managed company that cares about patient outcomes.
Our team has incomparable expertise and experience in the industry. Our doctors are Harvard, Stanford, and Mayo Clinic trained, all who completed accredited fellowships and are board certified in Pain Medicine. We have worked in clinics around the world trying to make people better. Over 50 years of collective experience has taught us what can make real patients better.

Thoughts:

Recommended by Beth Barnett

Links:

http://wellbrain.io/

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/

Methods and impact of engagement in research

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Methods and impact of engagement in research, from theory to practice and back again

Resource Type: Article

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Since 2012, PCORI has been funding patient-centered comparative effectiveness research with a requirement for engaging patients and other stakeholders in the research, a requirement that is unique among the US funders of clinical research. This paper presents PCORI’s evaluation framework for assessing the short- and long-term impacts of engagement; describes engagement in PCORI projects (types of stakeholders engaged, when in the research process they are engaged and how they are engaged, contributions of their engagement); and identifies the effects of engagement on study design, processes, and outcomes selection, as reported by both PCORI-funded investigators and patient and other stakeholder research partners.

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Links:

https://www.futuremedicine.com/doi/10.2217/cer-2017-0060

Increasing uptake of comparative effectiveness and patient-centered outcomes research

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Increasing uptake of comparative effectiveness and patient-centered outcomes research

Resource Type: Article

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The goal of comparative effectiveness research (CER) and patient-centered outcomes research (PCOR) is to improve health outcomes by providing stakeholders with evidence directly relevant to decision making. In January 2017, the Pharmaceutical Research and Manufacturers Association Foundation, alongside the Academy for Managed Care Pharmacy, organized a conference aimed at engaging experts and opinion leaders representing clinicians, patients and payers to identify and discuss barriers and strategies to enhancing uptake and use of CER/PCOR. This report summarizes the conference discussion in the following sections: preconference survey; summary of barriers and strategies to the uptake of CER/PCOR identified by conference attendees; and future perspectives on the field.

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Links:

https://www.futuremedicine.com/doi/10.2217/cer-2017-0060