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
- CLINICAL TRIALS NEXUS EUROPE – Digital Event November 26-27thThe Coronavirus Pandemic has got us all considering how to navigate clinical trials and what are the best approaches for patient recruitment and retention. It is my belief that implementing patient engagement from the onset of the trial during trial design could be the beneficial answer. … Read More CLINICAL TRIALS NEXUS EUROPE – Digital Event November 26-27th
- Top 10 Self-Help Tips for Back Pain and Fibromyalgia Sufferers | Nichola Adams, Health ErgonomistTo mark national Back Care Awareness Week (October 5-9), Nichola, a Technical Member of The Chartered Institute of Ergonomics and Human Factors, has compiled her ‘Top 10 Self-Help Tips for Back Pain and Fibromyalgia Sufferers’.… Read More Top 10 Self-Help Tips for Back Pain and Fibromyalgia Sufferers | Nichola Adams, Health Ergonomist
- Call for action: As patients and HCP’s please give your input on patient information leaflets (PIL) and medicine guidesyour input will help us understand the needs, challenges and expectations regarding this important information, co-create tools to increase patient involvement in the development of patient information leaflets… Read More Call for action: As patients and HCP’s please give your input on patient information leaflets (PIL) and medicine guides
- 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
Check out our archives
- Nov 2020
- Oct 2020
- Sep 2020
- Aug 2020
- Jul 2020
- Jun 2020
- May 2020
- Mar 2020
- Feb 2020
- Jan 2020
- Dec 2019
- Nov 2019
- Oct 2019
- Sep 2019
- Aug 2019
- Jul 2019
- Jun 2019
- May 2019
- Apr 2019
- Mar 2019
- Feb 2019
- Jan 2019
- Dec 2018
- Nov 2018
- Oct 2018
- Sep 2018
- Aug 2018
- Jul 2018
- Jun 2018
- May 2018
- Apr 2018
- Mar 2018
- Feb 2018
- Jan 2018
- Dec 2017
- Nov 2017
- Jul 2017
- Jun 2017
- May 2017
- Mar 2017
- Feb 2017
- Jan 2017
- Oct 2016
- Sep 2016
- May 2016
- Apr 2016
- Mar 2016
- Feb 2016
- Jan 2016
- Nov 2015
- Oct 2015
- Sep 2015
- Aug 2015
- Jul 2015
- Jun 2015
- May 2015