Participatory Health Informatics (markmerolli.com)
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Participatory Health Informatics (markmerolli.com)
This participatory health informatics scoop brings you content around how citizen participation and enabling technologies (i.e. web, social media, mobile, apps, sensors, games, personally-controlled health records, etc) are empowering people to be active participants in their own health management and thus, improving health outcomes. Another aim of this scoop is to educate on the growing field of & participatory health informatics #markmerolli #participatoryhealth #particpatoryhealthinformatics #particpatorymedicine #socialmedia #mhealth #healthapps #consumerhealth #empowerment #healthinformatics #digitalhealth
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When “patient centred” is no longer enough: the challenge of collaborative health

When “patient centred” is no longer enough: the challenge of collaborative health | Participatory Health Informatics (markmerolli.com) | Scoop.it
Patient centred care is being subsumed by collaborative health, enabled by sweeping technological, economic, and social changes. Doctors are losing some of their power and will have to alter their behaviour to retain public trust, writes Michael L Millenson

#### Biography

Michael L Millenson is a writer, consultant, researcher, and activist for better, safer, and more patient centred healthcare.

His book Demanding Medical Excellence: Doctors and Accountability in the Information Age achieved critical acclaim. As a healthcare reporter for the Chicago Tribune earlier in his career, he was nominated three times for a Pulitzer prize.

A quarter of a century ago, researchers proposed “patient centred care” as a conceptual framework that “consciously adopts the patient’s perspective” about what’s important in interactions with providers and institutions.1

Today, technological, economic, and social changes are moving healthcare in directions unanticipated by the patient centredness pioneers. It’s not that patient centredness no longer pertains; rather, it’s being subsumed under these larger forces reshaping 21st century medicine. I suggest “collaborative health” as an umbrella term framing how clinicians should respond.

The Victorian parliamentarian and novelist Edward Bulwer-Lytton declared, “A reform is a correction of abuses; a revolution is a transfer of power.” Patient centred care began as a correction of abuses, a response to patients being treated like “imbeciles and inventory.”2 Decades later, what’s claimed to be patient centred still too often reflects a paternalistic attitude, ironically expressed by comedian Stephen Colbert in a different context on the Late Show in 2015: “See what we can accomplish when we work together by you doing what I say? It’s called a partnership.”

In contrast, collaborative health describes a shifting constellation of collaborations for sickness care and for maintaining wellbeing that is shaped by people based on their life circumstances. The result is not reform, but a …
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Should Hospital Patients Have Bedside Access to Their Complete Medical Records?

Should Hospital Patients Have Bedside Access to Their Complete Medical Records? | Participatory Health Informatics (markmerolli.com) | Scoop.it
Abstract Keywords: Acute patient portals, patient portals, PHR, medical records, transparency, note-sharing. Citation: Grossman LV, Restaino S, Vawdrey D.
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An ongoing debate about patient access to their own medical records

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Eric Topol: Landmark Digital Medicine Trial: Patient-Generated Data Improve Cancer Survival

Eric Topol: Landmark Digital Medicine Trial: Patient-Generated Data Improve Cancer Survival | Participatory Health Informatics (markmerolli.com) | Scoop.it
Eric Topol published a Commentary on Medscape describing a study published in JAMA in which cancer patients that tracked 12 symptoms and shared the tracking results with their health teams had a five months increase in survival equivalent with some of the most promising drugs. http://www.medscape.com/viewarticle/881243 The conclusion of the commentary: Why is this trial so important? First, it is not a stand-alone result but the replication of one with concordant results, now with a fivefold increase in sample size and long-term follow-up (instead of premature discontinuation). Second, the improvement in survival of > 5 months compares quite favorably with the median survival improvement in major oncology drug trials, such as those seen with the exciting results of immunotherapy. Many of these trials have shown a 3-month median survival improvement for new drugs, leading to commercial approval and costing at least $100,000 per treatment. But unlike the drug trials, there was little
Dr. Mark Merolli - markmerolli.com's insight:

Nice commentary by Eric Topol exploring the power of participatroy health en mass and its comparison to big pharma drug trials

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Making My Health Record Work for Everyone

The report on the evaluation of the opt-out trials for My Health Record showed that the approach would help ensure the full health benefits of a shared electronic health record could be realised the Consumers Health Forum says“CHF has been calling for an opt-out system backed by strong community engagement and education and the findings of this report endorse that position” the CEO of the Consumer Health Forum. Leanne Wells said.
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How Data Registries Help with Full Information at the Point of Care

How Data Registries Help with Full Information at the Point of Care | Participatory Health Informatics (markmerolli.com) | Scoop.it
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
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Research Study: Wearables for health monitoring by independent living seniors

Research Study: Wearables for health monitoring by independent living seniors | Participatory Health Informatics (markmerolli.com) | Scoop.it
Dr. Mark Merolli - markmerolli.com's insight:

A research colleague is conducting participatory health research investigating use of wearables for health self-tracking in independent living seniors. If you're interested, check out her online survey or feel free to pass on if you know anybody who'd like to participate

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Digital Advance: A Future Technology Driven Model of Physiotherapy

Digital Advance: A Future Technology Driven Model of Physiotherapy | Participatory Health Informatics (markmerolli.com) | Scoop.it
Dr. Mark Merolli - markmerolli.com's insight:

This is a link to an article I wrote, based on my conference presentation at the recent Australian Physiotherapy Association conference in Darwin. In it, I discuss future technology driven models of healthcare impacted by technology. I hope it proves to be an interesting read and a good top-level overview for those wanting to understanding the role technology may play into the future..

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Looking Back At Today’s Healthcare In 2050

Looking Back At Today’s Healthcare In 2050 | Participatory Health Informatics (markmerolli.com) | Scoop.it
People are curious about the future of healthcare, so here is how I imagine a conversation with my granddaughter in 2058 about today's medicine.
Dr. Mark Merolli - markmerolli.com's insight:

I really like the hypothetical spin placed on the possible future model of healthcare in this piece. It starts with a grandfather in 2050 explaining to his grandaughter 

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Healthcare Technology Trends: The Top 40

Healthcare Technology Trends: The Top 40 | Participatory Health Informatics (markmerolli.com) | Scoop.it
Reviewing recent advances in healthcare technology trends shaping the future of medicine.
Dr. Mark Merolli - markmerolli.com's insight:

Another look at future technology trends shaping healthcare from the medical futurist. Worth a read

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Your next health tracker might be your house

Picture this: Clara, a generally healthy 30-year-old, hasn’t been feeling great. A sleep-tracking mattress, smart scale, and digital mirror recorded the changes.
Dr. Mark Merolli - markmerolli.com's insight:

Haven't heard of the "smart home"? Brace yourselves....

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Tanveer Syeda-Mahmood plenary talk: The Role of Machine Learning in Clinical Decision Support

A plenary presentation from SPIE Medical Imaging 2015 - http://spie.org/mi In this keynote presentation, Tanveer Syeda-Mahmood of IBM Almaden Researc
Dr. Mark Merolli - markmerolli.com's insight:

Look out for the future of IBMs Medical Sieve, using artificial intelligence to change radiological diagnostics

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10 Disruptive Techs That Will Transform Pharma

10 Disruptive Techs That Will Transform Pharma | Participatory Health Informatics (markmerolli.com) | Scoop.it
These 10 technologies will transform Pharma and we need to act now to reap the rewards in order to stay in business when they reach us.
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Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers

Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers | Participatory Health Informatics (markmerolli.com) | Scoop.it
Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet
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The Electronic Patient Reported Outcome Tool: Testing Usability and Feasibility of a Mobile App and Portal to Support Care for Patients With Complex Chronic Disease and Disability in Primary Care

The Electronic Patient Reported Outcome Tool: Testing Usability and Feasibility of a Mobile App and Portal to Support Care for Patients With Complex Chronic Disease and Disability in Primary Care | Participatory Health Informatics (markmerolli.com) | Scoop.it
Mobile and tablet apps, ubiquitous and pervasive computing, wearable computing and domotics for health.
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New technology will allow patients to become partners in research - Yale School of Medicine

New technology will allow patients to become partners in research - Yale School of Medicine | Participatory Health Informatics (markmerolli.com) | Scoop.it

Researchers at the Yale School of Medicine are launching a novel approach to research that engages people as true partners in science.

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Dina Destreza's curator insight, May 31, 2016 12:58 PM
This is very encouraging. 
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Mobile Apps Found to Improve Management of Chronic Conditions

Mobile Apps Found to Improve Management of Chronic Conditions | Participatory Health Informatics (markmerolli.com) | Scoop.it
Systematic review of randomized, controlled trials finds that mobile apps can benefit patients with chronic diseases.Review included 9 RCTs.Disease states included diabetes mellitus, cardiovascular diseases, and chronic lung diseases.Interventions...
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Twitter: The Future of Clinical Trial Recruitment

Twitter: The Future of Clinical Trial Recruitment | Participatory Health Informatics (markmerolli.com) | Scoop.it
The views expressed in this post are mine and mine alone and do not necessarily reflect those of any of my current or past employers. I recently wrote abou

Via Marie Ennis-O'Connor
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Apple's CareKit as an enabler for patient-generated healthcare data

Apple's CareKit as an enabler for patient-generated healthcare data | Participatory Health Informatics (markmerolli.com) | Scoop.it
"We believe that mobile devices such as iPhones will become the predominant means by which patients interact with BIDMC," says Beth Israel Deaconess Medical Center CIO John Halamka, MD. "Your phone will be the repository of your medical record."
Dr. Mark Merolli - markmerolli.com's insight:

Good to see weighting towards balancing patient health tracking data with more subjective patient-reported outcomes

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The Effectiveness of Self-Management Mobile Phone and Tablet Apps in Long-term Condition Management: A Systematic Review

The Effectiveness of Self-Management Mobile Phone and Tablet Apps in Long-term Condition Management: A Systematic Review | Participatory Health Informatics (markmerolli.com) | Scoop.it
Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet
Dr. Mark Merolli - markmerolli.com's insight:

The Effectiveness of Self-Management Mobile Phone and Tablet Apps in Long-term Conditions: Systematic Review

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Dina Destreza's curator insight, May 20, 2016 12:36 PM
Great insight. 
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The Emergence of Personalized Health Technology

Personalized health technology is a noisy new entrant to the health space, yet to make a significant impact on population health but seemingly teeming with potential.
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Assessing the Use of Mobile Health Technology by Patients: An Observational Study in Primary Care Clinics

Mobile and tablet apps, ubiquitous and pervasive computing, wearable computing and domotics for health.
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Community Engagement to Optimize the Use of Web-Based and Wearable Technology in a Cardiovascular Health and Needs Assessment Study: A Mixed Methods Approach

Community Engagement to Optimize the Use of Web-Based and Wearable Technology in a Cardiovascular Health and Needs Assessment Study: A Mixed Methods Approach | Participatory Health Informatics (markmerolli.com) | Scoop.it
Mobile and tablet apps, ubiquitous and pervasive computing, wearable computing and domotics for health.
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Effectiveness of Social Media Interventions for People With Schizophrenia: A Systematic Review and Meta-Analysis

Effectiveness of Social Media Interventions for People With Schizophrenia: A Systematic Review and Meta-Analysis | Participatory Health Informatics (markmerolli.com) | Scoop.it
Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet
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Mobile Is Personal: Why Mobile Is Essential for Patient-Focused Care

Mobile Is Personal: Why Mobile Is Essential for Patient-Focused Care | Participatory Health Informatics (markmerolli.com) | Scoop.it

Mobile is the single most important change in the world since the invention of the internet. Seventy-one percent of adults in the U.S. now own a web-enabled smartphone or other wireless device. Mob...

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Harnessing The Power Of Mobile For Healthcare

Harnessing The Power Of Mobile For Healthcare | Participatory Health Informatics (markmerolli.com) | Scoop.it

People are checking their phones more than ever. The average person checks their phone 150 times a day -- up from 110 just two years ago, according to Mary..

Dr. Mark Merolli - markmerolli.com's insight:

This is one of the better mHealth articles I've read in a while. Worth a read..

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Curated by Dr. Mark Merolli - markmerolli.com
I'm a health informatician, allied health professional (physiotherapist), and digital health consultant. Here, I'm trying to connect informatics peers one scoop at a time! #digitalhealth #healthinformatics #clinicalinformatics #healthtechnology #CXIO