Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton

Humanising healthcare: 15th October 12:00pm – 1:00pm

Healthcare is undergoing a digital transformation, technology and innovation designed to deliver more immediate, personalised and accessible care. Is digital the answer to the human needs of those facing sickness or are we just being subjected to the opinions of those who program the all powerful AI.
Living with sickness is a truly human experience, how do we balance these emerging tensions and still provide comfort and when needed hold a hand?

Humanising Healthcare is currently a very hot topic as AI, machine & deep learning, Telehealth, digital health applications and services are always in the healthcare industry news headlines. How these things are helping the lives of patients and producing better patient outcomes through replicating human behaviours etc is slowly becoming the normality. Being able to record and store certain types of health data using apps and home self tests on smartphone technologies for instance… do they humanise, or un-humanise our healthcare.

‘Person-centred’, ‘patient-centred’, ‘patient engagement’ and ‘patient / person centricity’ were a huge part of the conversations, including the belief that we should be making reference to ‘person’ before ”patient’.

Plus how can Design Thinking and Human-Centric Design develop more promising outcomes?
How can AI and Design thinking create the humanised touch that replicates the patient need for someone to hold their hand or give them a hug?

At the beginning of November I received an email from Jo Balfour at the Cambridge Rare Disease Network asking if I would like to participate in a series of Pharma magazine articles. The CRDN and Pharmafocus every month collaborate to share the stories of people living with rare diseases and to discuss their patient experience of how they live them, about diagnosis, treatments and their advocacy work.

This was an opportunity that I was not going to pass up so I said yes, and very soon was in contact with Matthew Fellows the editor at Pharmafocus magazine. Matthew provided me with a series of questions to ponder over and set me with a word limit of 1,200-1,400 which I found very difficult to do. No, not because I couldn’t write that much, but rather the opposite and trying to fit what needed to be said within than word limit proved to be a challenge. In the end it was over the limit but I gave Matthew permission to chop out what he could to fit it in.

It’s really exciting to have your story told, but to have my story in a pharma magazine is something else and a great wowser of an advocacy piece to end the year with. You can read the article via the link below.

https://edition.pagesuite-professional.co.uk/html5/reader/production/default.aspx?pubname=&pubid=cbfb5697-15ae-4d79-b44b-3d20bdfe3019&pnum=24

Roundtable summary co-authorship with Craig Mills from Frontera discussing the takeaways from the roundtables that took place at the eyeforpharma Patient Summit on 15th October. Craig, and ‘Person Before Patient’ founder Ruth Wilson both designed and co-chaired the event.

The paper provides readers with the takeaways from each topic area that was discussed in October during those roundtables. As mentioned previously in the Patient Summit section of this report the topics were Humanising Healthcare; Health Literacy; Disease Awareness; Building Trust, all areas of importance regarding building relationships between pharma and patients.

Very soon I will provide a link and some information to enable you to download and access the paper via eyeforpharma, it has not been published yet.