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

Alcohol Abuse Among the Elderly

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Alcohol Abuse Among the Elderly

Resource Type: website

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Aging.com serves as a resource to help seniors and their families learn more about the specifics of planning for their later years. From aging in place to insurance to government programs, they’ve got what you need to know to continue enjoying a long, healthy life.

The National Council on Alcohol and Drug Dependence points out that up to 11 percent of elderly hospital admissions are because of drug- and alcohol-related issues.

Learn more from the National Council for Aging Care

Thoughts:

Comprehensive, up-to-date. More resources at this site.

Links:

https://www.aging.com/alcohol-abuse-amongst-the-elderly-a-complete-guide/

The Pain Companion

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The Pain Companion

Resource Type: Website

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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

Thoughts:

Comprehensive, well-written. Prolific. Some ads.

Links:

https://www.thepaincompanion.com/

https://www.linkedin.com/in/sarahshockley/

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

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/

IHI Tools to Support Patient Engagement

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IHI Tools to Support Patient Engagement

Resource Type: Tools

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The goal is to focus on patient engagement and emphasize the importance of the relationship between providers and patients and their families. In honor of this week, I’d like to highlight some of the resources IHI has developed for care providers, middle managers, executives, boards, and others to encourage patient and family engagement.

PROMISES (Proactive Reduction of Outpatient Malpractice: Improving Safety, Efficiency, and Satisfaction) Project

Partnering in Self-Management Support: A Toolkit for Clinicians

Strategies to improve communication between providers and patients during the office visit.

Thoughts:

I support the vision of The Institute for Healthcare Improvement (IHI), founded by Don Berwick: Everyone has the best care and health possible.

Links:

http://www.ihi.org/communities/blogs/_layouts/15/ihi/community/blog/itemview.aspx?List=0f316db6-7f8a-430f-a63a-ed7602d1366a&ID=46

https://twitter.com/TheIHI

https://www.facebook.com/TheIHI/

https://www.youtube.com/user/IHIvideo

EU Patient Empowerment Campaign

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EU Patient Empowerment Campaign

Resource Type: Website

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EPF officially launched a major one-year campaign on Patient Empowerment on 20-21 May 2015. We will work in concert with the health community to promote understanding of what patient empowerment means from the patient perspective among political decision-makers and health stakeholders.
“Patients with chronic conditions are often referred to as the most under-used resource in the health system while patient-centered care models have demonstrated better quality of care as well as potential long-term cost-efficiencies. Too many patients are still struggling to get the support they need to become equal partners in care. To make real progress, we need to make patient empowerment a priority, starting with the development of an EU-wide strategy and action plan”

Thoughts:

No need to reinvent the wheel. Especially nice graphic

Links:

http://www.eu-patient.eu/campaign/PatientsprescribE/

https://twitter.com/eupatientsforum

https://www.facebook.com/EuropeanPatientsForum

What’s the Problem with the Experience of People at the Center of Care?

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Logo for Danny van Leeuwen Health Hats

Health Hats: What’s the Problem with the Experience of People at the Center of Care?

Resource Type: Blog post

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Wearing my many hats: e-patient, caregiver, nurse, informaticist, and leader, I am blessed with mostly positive experiences on my health journey.  At worst, my experiences are seriously annoying. This week, attending a benefit for MITSS (Medically Induced Trauma Support Services), I’m reminded that not everyone is so lucky. As I scan the industry several problems with the experience of the people at the center of care (patients, caregivers, clinicians, direct care and support staff) jump out

Thoughts:

Links:

https://www.health-hats.com/whats-the-problem-with-the-experience-of-people-at-the-center-of-care/

https://www.linkedin.com/in/healthhatsdannyvl/

https://twitter.com/HealthHats

https://www.youtube.com/user/dvanleeu

https://www.health-hats.com/

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

What do empowered and engaged really mean?

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What do empowered and engaged really mean?

Resource Type: Video

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In participatory medicine, we say that e-patients are “empowered and engaged.” But what does that really mean, in practice? This 9-minute presentation by ePatient Dave deBronkart offers good working definitions of these too-often-fuzzy terms.

Thoughts:

Tyson Ortiz says

June 29, 2017 at 2:45 am

Love the emphasis on *building capacity* for patient efficacy!

From my experience, professionals also need to grow capacity as teachers who can see, use, and build on an e-Patient’s skill… transfer some problem-solving responsibility to them while still ensuring safe, quality care.

The model in the video looks interesting… the question is really *how.*

We’re talking about developing skills, which is very different from creating awareness or knowledge. The latter is fast and easy, but overpowered by current habits. The former is slow and difficult, but has the power to shape habits.

I think skills are created at the individual level, as a single person get reps practicing a pattern that teaches them a skill. Good coaching is vital for effectiveness.

Does anyone in healthcare have a program that gives patients deliberate, repetitive practice with coaching to help empower them?

Does anyone have a program that gives professionals deliberate, repetitive practice with coaching to help them learn to cultivate and leverage patient empowerment?

Links:

https://www.youtube.com/watch?time_continue=2&v=fak3buisWT8

https://twitter.com/epatientdave

https://www.facebook.com/epatientdave