Humanising Healthcare is what I’ll be discussing with friend and fellow patient advocate Cécile Tardy, but it’s just one of the Patient-Led Round-Table topics!
Humanising healthcare: Carole Scrafton & Cécile Tardy
Healthcare is undergoing a digital transformation, with technology (e.g AI, big data) aiming at delivering more personalised, immediate and accessible care.
While the benefits of technology to accelerate R&D and innovation are promising, is digital the answer to the human needs of those facing sickness?
How do we ensure that the ‘care’ component of healthcare still remains the focus in an increasingly digital and connected world?
Living with sickness is a truly human experience, how do we balance these emerging tensions, combine the best of both technology and humanity, still provide comfort and when needed hold a hand?”
Take a read of this article written by Tom Murphy that I sourced from ‘Medical Express‘, OCTOBER 8, 2019, that gives you an excellent example of ‘holding a hand’ which goes beyond comforting and the need for quick / immediate access to answers from a doctor.
© 2019 The Associated Press. All rights reserved.
#healthcare #digital #AI #technology
There are other discussions going to be taking place
All the round tables are co-chaired by
Considering Chronic diseases are on the rise…
How can digital help us to become more actively involved in our own health? Disease Mapping through Health Apps for example collecting data that can help pharma understand our diseases better, whilst we get to self manage to a better level!
Should a better understanding of patient experience be the driver behind disease awareness? The question could be… Is it the driver behind disease awareness, which then helps to improve communications, and also, to develop a level of trust between pharma and patients?
October is Health Literacy Awareness Month and an issue that as patients we feel to be a very important issue to address. It is great to be able to debate it, and hopefully, to help build a bridge between pharma and patients by creating possible solutions.
Thinking about medical literature, jargons and general language, and how it is written… Will improving health literacy help to create a better relationship between patients and pharma through having easier, and understandable, communications?
Then, will that help to improve the shared decicion making process?
Having a true understanding of what our diseases are, and how they affect us, will help them to understand our ‘needs’ to a much better level, the kind that brings us closer together and be able to communicate easier. This is my own opinion!
Decision making could become a ‘shared experience’ meaning patient involvement, and engagement, could become more ‘viable’ as well as successful. This is my own opinion!
Is this true? Does having a better understanding of disease awareness improve shared decision making?
Richard Stephens | Alan Thomas
Through learning to understand our diseases better, and how they affect us, it should develop a better understanding of the patient experience.
In my own opinion!! This means that learning about disease awareness, how to create a shared decision making experience through using a communicable language understood by both patients, and pharma, should improve the level of trust!
Considering the above… Would this help to bridge the gap between patients, and pharma, by improving their relationships enough to improve the level of ‘trust’?
Take a look at the video showcase below
eyeforpharma Patient-led round-tables 16th Annual Patient Summit 2019
Many thanks for reading.
Wishing everyone wellness
Carole – CEO & Co-Founder ‘FibroFlutters Advocacy Group’
Projecting the voices of many… not just my own!
However, the ‘opinions’ in this article are completely my own, and no-one else took part in its writing!!
I am attending this event at the discretion of eyeforpharma and its ‘patient policy‘.
Locally we’re a Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK …
… but we also offer online support, advice and advocacy via our social media network , chronic illness portal, across the globe.
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’m using a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way!
You all need to pitch in and be socially responsible for each other!!
and if you have a problem we are always open to discussion, just e-mail Carole
PLEASE NOTE: We are not medical professionals, but as patients we are sharing news, articles, information and resources out to you as all stakeholders to help keep you up to date within the Medical healthcare industries and chronic illness health, rare disease and our advocacy work for patients, health, research and pharma, including digital and AI in medicine.
PLEASE NOTE: THAT THIS SITE USES GOOGLE ANALYTICS TO COLLECT DEMOGRAPHIC INFORMATION FOR INFORMATION AND CONTENT DECISION MAKING PURPOSES ONLY AND NOT TO SELL TO 3RD PARTIES.
MANY THANKS in advance for your understanding –
from the administrator – fibrofly73 aka Carole
And my profile on Synapse where you can read about the initiatives that I am involved with
FibroFlutters on Synapse where you can read about the initiatives that we are involved with
- There’s still time to REGISTER for this conference on RARE DISEASE AND ORPHAN DRUGS 1 – 2 OctoberThe goal of this Conference is uniting all well-known clinical researchers, biotech professionals, Medical Advisories, Academicians and decision makers to discuss possible ways to accelerate orphan drug development and access to rare disease patients, including the introduction of recent technologies and products to help aid the access of orphan drugs… Read More There’s still time to REGISTER for this conference on RARE DISEASE AND ORPHAN DRUGS 1 – 2 October
- Are you aware of this #Rare? Today is International Ataxia Awareness Day.International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on this rare disease. #IAAD… Read More Are you aware of this #Rare? Today is International Ataxia Awareness Day.
- Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th SeptemberWolfram Syndrome is a rare genetic disorder which is also known as DIDMOAD syndrome after its four most common features: Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy and Deafness… Read More Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th September
- Almost there! Will you join us to talk about ‘Reaching patients and educating patients using agile social media strategies’?#RegisterNow & join me at the @RE_Pharma #Pharma #Patient #Europe 2020 PATIENS CAN ATTEND FOR FREE #Digital Conference & Expo 15-16 September #pharma #patient #patientengagement #patientcentricity #REpharmaPatient #socialmediastrategy #DrugDevelopment #communications #clinicaltrials… Read More Almost there! Will you join us to talk about ‘Reaching patients and educating patients using agile social media strategies’?
- Pharma / Science / Tech / Digital / AI – Categories listingCategories listing – Pharma / Science / Tech / Digital / AI… Read More Pharma / Science / Tech / Digital / AI – Categories listing
- Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020After having constant dislocations in my knee where the PVNS tumour was removed from 6 years years previously had caused major damage. This was worsened with my hEDS which effects all of my joints. … Read More Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020
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