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Allie Davanzo: The Power of Art in Medicine

This is a guest blog post by Allie Davanzo. Allie was my student in the New Media and Health Communication class I taught at TCNJ. More about the class is shared in this post. 

Allie Davanzo is a sophomore Public Health major at The College of New Jersey who hopes to pursue a post graduate degree in occupational therapy. Outside of the classroom, she enjoys doing yoga, baking, and being outside.

Healthcare as we know it

Waiting for referrals from doctors in order to see specialists. Misunderstanding complex insurance policies. Being put on waiting lists for organ donation and for appointments. The endless struggle to see clinicians. Health professionals’ use of complicated and vague language. Uncertainty about diagnoses. The lack of transparency. Healthcare as we know it is anything but patient-friendly. While the American health care system has many flaws, we cannot immediately repair these logistical issues. However, we can focus on using art as a way to help patients better understand health care and help them to feel more present in their health care experiences.
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How Data Registries Help with Full Information at the Point of Care

The practice of medicine is shifting from episodic patient care to care focused on addressing many broad-based, unique, sometimes esoteric health conditions. Fueling this transition is a new focus on patient reported outcomes and health data registries that aggregate a patient’s information in one central database where it can be accessed by patients, clinicians, and researchers as needed. All of this is based upon the premise that good healthcare delivery requires clinicians to have full information at the point of care.

A patient reported health outcome  is an outcome that comes directly from something a patient has experienced. It is used to better understand the efficacy of a particular treatment as perceived by the patient, in contrast to an outcome that has been interpreted by a clinician. There are many efforts underway to develop and test mechanisms for collecting patient-reported outcome data and deploy it to more intelligently improve treatment choices.
Clinical data registries are also emerging as a new way to collect, record and analyze patient information, and the care patients receive. These registries consist of data that is aggregated to reflect patterns among patients who share a common basis and need for care. They harness the power of information technology to capture statistically-relevant, evidence-based patient data on a specific disease that assists in formulating decisions regarding the most optimal approach and best outcomes.

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e-Patients Drive the Conversation at CCCC’s 9th Palliative Care Summit

This post by SPM member MaryAnne Sterling is a thrilling sequel to our ongoing posts about CCCC (an organizational member of our Society) and its support for e-patients at their annual summit. MaryAnne is CEO of Sterling Health IT Consulting. She’s a healthcare transformer and Alzheimer’s activist whose motto is: no family caregiver left behind. 


The 9th Palliative Care Summit was held recently in Sacramento, convened by the Coalition for Compassionate Care of California (CCCC) and the Children’s Hospice and Palliative Care Coalition. In January we blogged here that PCORI (Patient Centered Outcomes Research Institute) had issued a grant for e-patients to attend, and asked for applicants. Fifteen e-patients were selected to participate in the event this year – way up from the five we blogged about last year. I was thrilled to be one.

But we didn’t just “participate”; we drove the conversation – on multiple levels. This should be a model for other healthcare conferences to follow. Why? Read on.
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Precision Prism

I’m the son, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services.

My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present. read more…

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Join SPM Newsletter Team as Editor and Bring Real News to Members!

The Society of Participatory Medicine is currently searching for a Newsletter Editor. Is that you??

The SPM Newsletter is an important communication mechanism. The goal of the Newsletter is to inform members about current events, provide updates on SPM activities, and share news felt to be relevant for members and supporters. The Newsletter Editor plays a critical role in leading and steering this effort. The Editor is a voluntary position, working with the volunteer Newsletter Team.

Editor responsibilities include:
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Our Journal of Participatory Medicine: an update, current metrics, how you can help

JoPM logo
SPM president Joe Ternullo, formerly of Partners Healthcare, sent this letter to our members this week. It will also be posted as an editorial on the Journal’s site.


Our Journal, begun as a grass roots initiative at the Society’s formation, is a crown jewel. It was the first peer-reviewed publication to focus exclusively on patient empowerment, and was created as a beachhead to establish participatory medicine as a legitimate area of academic pursuit. Volunteer editors-in-chief Charles Smith, Joe Graedon and Terry Graedon (and the late Jessie Gruman) have been steadfast and have expertly run the Journal.  Accomplishments include:

  • 227 articles published  
  • 7,000 visits to journal website monthly
  • 10,000 pageviews monthly
  • 21 articles currently in review

What accounts for the Journal’s success?  What are the needs?  How can you get involved? What are the benefits of involvement? 

Success: It is all about great people!  Authors have continued to submit high quality, relevant and timely topics while the Journal’s team of committed professionals have been persistent in quietly and competently ensuring that precepts of participatory medicine are diffused to advance care and improve lives. read more…

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Shared Decision Making in Imaging: How Should Patients and Physicians Discuss the Costs of Care?

The Society for Participatory Medicine is pleased to announce that we will be partnering with the American College of Radiology to present an important topic in healthcare at the next Learning Exchange, which will take place on April 19, 2017, 2-3PM EST.  Join us as we share tips, data and best practices that can empower you to make informed decisions as you discuss and understand the relative benefits and costs of diagnostic imaging.  Pre-registration is required and you can sign up here. Please also spread the word, as this is open to the community!

Speakers

Matt Hawkins, MD, Pediatric Interventional Radiologist, Assistant Professor, Emory University School of Medicine

Sarah Krüg, Exec Director, Society for Participatory Medicine; CEO, CANCER101; Founder, Health Collaboratory

Emmy Ganos, PhD, Program Officer, Robert Wood Johnson Foundation

Jennifer Coleman, MHSA, FACHE, CMM, Executive Director, Grand Traverse Radiologists

Andrea Borondy Kitts, Lung Cancer & Patient Advocate, Consultant, Lahey Hospital & Medical Center, The University of Connecticut Health Center

What is the Learning Exchange?

We are each individually advancing the participatory medicine movement in our day-to-day lives and interfaces with healthcare and/or our work. Understanding the work we are conducting within our individual silos can help us learn from one another, allow us to build upon ideas, forge collaborations, provide a forum for feedback and suggestions, and hopefully avoid duplication of efforts. Helpful tips and best practices we’ve adopted as we navigate the healthcare system can also be beneficial to others. The SPM Learning Exchange is a forum launched in 2016 to help us learn from one another and capture the work underway within participatory medicine under one umbrella.  If you are interested in presenting your work, best practices or tips during a future learning exchange, please submit here. If you have any questions, please contact sarahkrug@cancer101.org

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“Words that annoy, phrases that grate”: BMJ Patient Panel post & tweetchat

We’ve written often here about the BMJ’s leadership on not just listening to patients but looking at healthcare from the patient’s perspective. Their patient partnership campaign, launched in 2014, includes a patient advisory panel that works actively to consult with the editors on several projects, and ongoing discussions lead occasionally to editorials (such as last month’s on the tricky issues of industry support for patient organizations) and blog posts.

A new post has just gone live, and will be accompanied by a #BMJdebate tweetchat next Thursday, April 13, at 5 pm GMT, noon ET, 9 am PT.  The subject is a hot one for many patients and patient voices: Words that annoy. Phrases that grate.

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Prepare for NEJM’s major web event on sharing research data next week

In November we posted about an extraordinary development: NEJM Data Analysis Challenge: can others create value by seeing researchers’ data? The project has come to fruition, and the big event (free) is next Monday-Tuesday. The question for us: What’s the impact on patients?


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Research & drug development news: European Public Health Alliance joins Europe-wide challenge to patent for Hepatitis C treatment

An announcement today in Europe (press release below) brings a new angle to the copious US coverage of drug pricing, such as predatory pricing of the EpiPen and the smirking, seemingly sociopathic Martin Shkreli. For the drug described below, the Médecins du Monde (Doctors of the World, below) blog says, “While [this drug is] a major therapeutic advance, the molecule itself, which is the result of work by many public and private researchers, is not sufficiently innovative to warrant a patent.”

That touches on another hot topic in the US: the use and re-use of data from government-funded research – whose data is it? Who owns the intellectual property? That’s what Vice President Biden spoke about (my video) at Health Datapalooza last year, and it’s at the core of the New England Journal’s SPRINT Data Analysis Challenge, which we blogged about last fall – its winners have been announced and there will be a free live two-day web event April 3-4 in Boston. That challenge arose out of a controversial editorial that said some people consider data sharing to be a “parasite” problem.

Whose data is it? Whose IP is it? What are the rights of investors vs the people who have the problem, aka “patients”?


Brussels,  27 March 2017

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Service Agreements Among Friends and Colleagues

I’m an old hippie [left]. I’ve lived in many houses and on a farm (commune?) with other people. Regularly we heard, “I agreed to what? No I didn’t.” “Since when is that a rule?”

I, and then my wife and I, developed skill in clarifying expectations and accountabilities: much effort invested to reach consensus, always worth it.

Later, in my work life as a healthcare leader, I tried to use service agreements between departments to clarify expectations and accountabilities. It was often resented and seldom reciprocated. 

Now, as a person with growing and seemingly unmanageable pro bono participation in volunteer and not-for-profit organizations, I try to do the same.

Service agreements set boundaries, which can be especially important for someone who’s managing a chronic condition. The details may vary, but they generally contain:
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