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Is 'the patient story' really any better than 'the patient journey'?

Is 'the patient story' really any better than 'the patient journey'? | Patient | Scoop.it

The compelling idea behind digital health isn’t just to deliver health data to patients and doctors. It’s to turn that data into a narrative that reveals some kind of story about a person’s health.

 

That’s what Dr. Leslie Saxon and her team are trying to achieve at the Center for Body Computing at the University of Southern California. Trained in invasive cardiology, Saxon is the chief of cardiovascular medicine at USC’s Keck School of Medicine. On the side, she works at the center with engineers, physicians, designers, artists and entertainers to study and develop digital health solutions that put patients at the center of their own care.

Andrew Spong's insight:

'The patient story' is marginally better than 'the patient journey', but being a patient isn't an exercise in fabulation: it's about healing, or the optimal management of a chronic condition.

 

Please: No. More. Metaphor.

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The empowered patient is a symptom of change in healthcare
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Healthcare is getting better. Let's talk about what you can do to make it even better, faster.

Healthcare is getting better. Let's talk about what you can do to make it even better, faster. | Patient | Scoop.it

Healthcare is getting better. Let's talk about what you can do to make it even better, faster.

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The gamification of health may be booming, but is it effective?

The gamification of health may be booming, but is it effective? | Patient | Scoop.it

The health care industry's use of gaming to encourage consumers to adopt healthier habits is growing rapidly, but evidence that such strategies can produce lasting positive health outcomes is lacking.

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Patients Included: a global patients' charter

Patients Included: a global patients' charter | Patient | Scoop.it

This is the week that the ‘patients at conferences’ discussion went critical.


A number of blog posts, facebook discussions, and Twitter conversations have emerged, all of which signify the need for the development of a systematic means of calling to account the practices of conference organisers who wish to include patients, in any capacity.


This is not a new debate, and many voices have participated in it to date.


Landmark posts from Lucien Engelen and a long-standing commentary on a number of aspects of the discussion by Dave deBronkart have cleared much of the ground around this topic.


However, it has been remarked on numerous occasions by many observers over a number of years that in order for the Patients Included initiative to be able to exert any sort of influence, an instrument is required against which the compliance of conference organisers may be measured, and through which they may be called to account.


Those that are compliant would be able to accredit themselves as meriting the display of the ‘Patients Included‘ logo, and linking to the charter.


Those that are not compliant could be encouraged to become so.


Everything that follows — including the name of this initiative — is up for debate, but the easiest way of simplifying the challenge of defining what a Patients Included Global Patients’ Charter could encompass, and how it will be brought into existence, may be to offer a working hypothesis.


So I will.

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Sunnie Southern's curator insight, March 7, 5:29 PM

Stwern thank you for the inspiring post! 

Starting with conferences is great.  BUT I would love to see us think of this as step 1 w/ the true end goal being patients included in all critical discussions that directly impact them in health care.  ePatient Dave is the trail blazer in this arena, Suzanna Fox has provided an amazing platform to increase the volume on the issue through her work with Pew and now with the RWJF, Regina Holliday helps all of us members of The Walking Gallery of Healthcare visually represent each of our struggles and victories as patients and patient advocates,  and there are a few new comers making a big impact including Kym Martin who is leading a newly formed organization called the Patient Experience Council (#PXC) for the Louis Sullivan Institute.  There are also some great physician advocates like Alan Greene, Wen Dembrowski, Roni Zeiger, Peter Margolis, Joyce Lee, and Patrick Jonas leading important work to bring patients into the center of of care  It is going to take all of us to fix this system that has gotten so far away from what it is intended to do - help patients get well.  Each of us can commit to finding our own way to AMPLIFY the patient voice in health care.  Let's figure out how we work together to make it happen!  

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80% of Citizens Advice Bureau consults may be saving the NHS up to £750 per client

80% of Citizens Advice Bureau consults may be saving the NHS up to £750 per client | Patient | Scoop.it

Over 80% of our Citizens Advice Bureau clients in the UK said that advice made them feel less stressed, depressed or anxious.

 

On average, it costs the NHS £880 to treat a patient for anxiety or depression, whereas the cost of advice per client is £123.

 

This means a saving of over £750 could be made each time an advice intervention mitigates the need for GP mental health treatment

Andrew Spong's insight:

Health economics outcomes research at its best.

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"Is anyone there?" Is your online health community a ghost town?

"Is anyone there?" Is your online health community a ghost town? | Patient | Scoop.it

Colleen Young writes: "If you want to build a thriving community, focus on the people, help them connect and get them talking. To be successful, a community needs activity."

Andrew Spong's insight:

A great post from expert community management practitioner, Colleen Young. Make sure you don't miss the comments, too.

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PatientView's curator insight, February 25, 5:37 AM

agree with andrew S an important lesson for e-communities

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Like every other peripheral you have or will ever buy, your Nike+ FuelBand is heading for the landfill

Like every other peripheral you have or will ever buy, your Nike+ FuelBand is heading for the landfill | Patient | Scoop.it

Nike has updated its Nike+ Fuel app for iOS for the first time since September, adding connectivity with Apple HealthKit, new social sharing features, and, in keeping with a recent fitness band trend, the option to eschew the Nike+ FuelBand hardware entirely and track movement via sensors embedded in the user’s smartphone.

Andrew Spong's insight:

You'll have stopped wearing yours within 12 weeks of having bought it, probably, but It's the inevitability of the demise of health peripherals in the drive towards the consolidation of sensor-driven trackers in phones which I find so teeth-grindingly irritating.

 

Wasn't this written in neon, way back when?

 

Yes.

 

Did that stop screeds of breathless commentary about its 'game changing' status being written?

 

No.

 

Will the latest addition to the list of ex-peripherals stop us writing about the next one? Scandu, for example?

 

You already know the answer to that, of course. 

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Man 3-D prints his wife's tumour to help acquire a life-saving diagnosis

Man 3-D prints his wife's tumour to help acquire a life-saving diagnosis | Patient | Scoop.it

3D designer Michael Balzer converted 2D MRI scans into a 3D model, 3D printed it, and circulated the print among specialists to secure a life-saving tumour diagnosis for his wife.

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Factors to consider when designing health tech for seniors

Factors to consider when designing health tech for seniors | Patient | Scoop.it
Mobile applications alone aren’t the answer.Simplicity and service are the keys to adoption.Focus on solving problems, not technology.Engage family members.Go direct to the consumer if you can. Understand that it’s still early, and be patient.
Andrew Spong's insight:

A refreshingly sensible list of criteria, for once

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kamagrahilfe's curator insight, January 8, 5:33 AM

Kamagra online Deutschland mit kostenlosem Versand

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Is this the digital health revolution?

Is this the digital health revolution? | Patient | Scoop.it

"When living with chronic disease, one of the least exciting innovations to float to the surface, in my opinion, is a shiny new app requiring more effort than it’s worth..."

Andrew Spong's insight:

I'm hoping to find the time to write an end-of-year blog post before the holiday shutdown. If I do, this theme will certainly feature.

 

In essence: we are cursed to live in one of the most tedious ages healthcare has seen. The history of technological innovation is one of consolidation. Miniaturisation and acceleration are drivers of this change, but the motive force propelling it forward is the desire to aggregate functionality, not the fact that things get smaller and faster, which merely facilitate this.

 

There are interesting times ahead for health, but if we view success in terms of improvements in patient outcomes rather than health tech bubble funding rounds and out-of-control hype, this era does not qualify.

 

EDIT I wrote this: https://www.linkedin.com/pulse/five-new-years-resolutions-digital-health-andrew-spong

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Q&As from a Twitter chat with the Patient Centered Outcomes Research Institute (PCORI)

Q&As from a Twitter chat with the Patient Centered Outcomes Research Institute (PCORI) | Patient | Scoop.it

A summary of a recent Twitter chat with the Patient Centered Outcomes Research Institute (PCORI)

Andrew Spong's insight:

Clear intentions, less clear results.

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Wearable technology and digital health should shift focus to chronic illness

Wearable technology and digital health should shift focus to chronic illness | Patient | Scoop.it

At this point, there isn’t a viable or sustainable paradigm for monitoring and tracking the chronicity of care digitally

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IBM's Watson will give you health advice based on your DNA

IBM's Watson will give you health advice based on your DNA | Patient | Scoop.it
Maybe you have a fitness tracker. Maybe you've gotten your genome sequenced before. Probably your medical records are kept in electronic, instead of paper, form. Now some companies are seeking to combine all those things and more into a talking, personalized, health-advice app. Not sure when to give yourself your next insulin shot after having a croissant for breakfast? You can ask the app. How much exercise should someone with your genetic makeup be getting? The app will give you suggestions.
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Digital health belongs to the patient

Digital health belongs to the patient | Patient | Scoop.it

Digital health is bigger than a business model, but it is no more than an aspect of a matrix of economic, cultural, and social change which is difficult to map, let alone react to, due to the speed and scale of its growth.

 

Right now, digital health is having its moment, and as such it is challenging for its most high-profile proponents to accept the fact that their businesses will not be swept away, but simply left behind.

 

The future which digital health’s evangelists are so sure they will be a part of will accelerate past, and then away from them.

 

Some days, the health conversation on the social web can make you believe that this is not the case. And on days like that, it is worth remembering something...

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Radical consumer-first ideas are necessary to revolutionise healthcare

Radical consumer-first ideas are necessary to revolutionise healthcare | Patient | Scoop.it

To engage with the newest and growing healthcare users, the most successful products will excite consumers, and will make it just as easy for people to monitor or improve their health as it is for them to buy clothes or stream music. By driving interest, engagement, and adoption, digital health companies can make a bigger impact on positive outcomes.

Andrew Spong's insight:

I like this message: "starting a digital health company comes with an obligation to positively impact the healthcare industry"

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Going social: why patient organizations cannot ignore social media

A presentation given by Len Starnes (@LenStarnes) at the 7th Annual International Experience Exchange for Patient Organizations, Munich, 3 - 4 March 2015; #IEEPO2015. 

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The collaborative healthcare honeycomb: an infographic

The collaborative healthcare honeycomb: an infographic | Patient | Scoop.it

HT @Scr1v

Andrew Spong's insight:

Ross Scrivener (@Scr1v) demonstrates some of the collaborative healthcare initiatives that didn't get a mention at eHealth Week.

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Marc Senterre's curator insight, March 6, 2:11 AM

Interesting view ...

Sunnie Southern's curator insight, March 7, 5:08 PM

Interesting way to think about and visualize health care collaboration.  

Art Jones's curator insight, March 13, 10:49 AM

The collaborative health honeycomb is a vibrant mashup of compelling concepts and technologies.

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Could Amazon's future healthcare IT offerings connect with consumers in a way legacy vendors have failed to?

Could Amazon's future healthcare IT offerings connect with consumers in a way legacy vendors have failed to? | Patient | Scoop.it

Healthcare experts predict that Amazon will formally enter the healthcare marketplace in 2015.

Andrew Spong's insight:

I've always thought that it would be the mobile OS owners such as Apple and Google who would crack the universal EHR conundrum in a way that legacy vendors have spectacularly failed to do, but who knows? Maybe Amazon could do it first.

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Why can’t patients receive blood results via text or use Skype for appointments?

Why can’t patients receive blood results via text or use Skype for appointments? | Patient | Scoop.it
With 86% of people going online to look up health matters, patients are ready for a technological change but the NHS is not
Andrew Spong's insight:

This is funny. I was going to cc @mjseres to this article... until I discovered he wrote it! Nice one, Michael.

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ChemaCepeda's curator insight, February 19, 10:29 AM

¿Es posible conjugar seguridad y privacidad con simplicidad? Cuanto más fácil pongamos las cosas a pacientes y profesionales, menos resistencias generará el uso de las tecnologías

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The hospital discharge process: a call for technology’s help?

The hospital discharge process: a call for technology’s help? | Patient | Scoop.it

While being discharged from the hospital even after a minor procedure is not simple (due to regulatory documentation requirements often hard for both patients and physicians to sift through), the process for a patient with co-morbidities after a prolonged stay is daunting.

 

How can technology help?

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UK's Royal College of GPs new video actively promotes care planning for complex needs

UK's Royal College of GPs new video actively promotes care planning for complex needs | Patient | Scoop.it

The move to a more patient-centric system of primary care is a key aim of NHS England and is increasingly important as the UK faces an increase in its ageing population, many of whom live with several long-term conditions, such as diabetes and respiratory conditions.

 

To better support GPs in adapting to this service the RCGP has launched its Collaborative Care and Support Planning programme. Funded by the Health Foundation the programme aims to help primary care embed collaborative care and support planning for people living with long term conditions.

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Eric Salat's curator insight, February 6, 2:41 AM

Une réflexion sur une nouvelle organisation destinée aux Ainés de 75 ans avec facteurs de comorbidités multiples et plus proposée par le Collège Royal de Médecine Générale ...loin de notre PAERPA

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Design thinking for digital health literacy

Design thinking for digital health literacy | Patient | Scoop.it
Andrew Spong's insight:

A 20 minute video presentation from 2013 by Kirsten Ostherr, Ph.D.

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Internet use and social engagement associated with increased health literacy

Internet use and social engagement associated with increased health literacy | Patient | Scoop.it

Consistent internet use and engagement in social activities were associated with protection against decline in health literacy with age.

 

Greater age, lower education, lower financial status, and with more than one limitation in any instrumental activity in daily life were associated with decline in health literacy.


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Swaive: a HealthKit-compatible smart ear thermometer

Swaive: a HealthKit-compatible smart ear thermometer | Patient | Scoop.it

Users can track and follow how their temperature improves or falls by the hour, day and week, and easily share that information with their clinician. If an immediate diagnosis is necessary, the temperature readings can be shared instantly by adding the person to a sharing list.

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ONC attempting to create consumer demand for 'Blue Button' EHR access

ONC attempting to create consumer demand for 'Blue Button' EHR access | Patient | Scoop.it

The Blue Button is a public-private collaborative initiative from the US  Office of the National Coordinator for Health IT (ONC) that aims to give patients easier and more sensible access to their health data. What began as a pilot within the Department of Veterans Affairs (VA) Health has shifted into an industry-wide focus.

 
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What do patients want most from health apps? Here are 10 answers

What do patients want most from health apps? Here are 10 answers | Patient | Scoop.it
Andrew Spong's insight:

The thing that stands out for me here: patients want disease information and practical support, yet developers (and their sponsors) are more likely to publish trackers and diaries, which only make it to third place.

 

I know some interesting integrated solutions which attempt to hit a number of the targets in this chart are on the way, but if this PatientView data tells us anything, it is that 'single solution' apps aren't of a great deal of interest to patients -- unless, perhaps, they focus on disease information.

 

 

 

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Controversy around Samaritans 'Radar' app

Controversy around Samaritans 'Radar' app | Patient | Scoop.it

Samaritans, an enormously well-respected suicide prevention charity, has launched an app which it says should “help support people struggling to cope and ultimately save lives”. But the app is causing upset among those it is designed to help, and some have now called on the Samaritans to withdraw it

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