#Sherpas20 project: against digital isolation

Esta entrada también está disponible en: Spanish

Have you taken a look at the hashtag #Sherpas20? If you do you may not understand much, but sure you will notice something: we had a great time! And, of course, we work a hell of a lot! Take a look at the video and see how doctors, pharma, communication agencies and journalist and all health related agents can work together and build something great!

Starting from the beginning…

One month ago or so I was contacted by another patient on twitter. She wanted to know if I was interested in participating with other patients in a huge project organized by Menarini that would join all the sanitary agents to work together: doctors, patients, pharma companies, e-health communication specialists, physiotherapists, nurses…

I said ‘YES!’ without even thinking about it and not knowing until yesterday what was it all about haha :D. I have to say that I am happy as Larry that I did so! It has been a great experience and it is nice to see that society counts with us patients more everyday :D.

I hope this to be useful for other patients so that they all feel confortable and eager to participate in all these events that are held and opened for us. It is important that we take all the opportunities we have to speak by ourselves: to tell and show the world what we need and how we feel.

Please note that #sherpas20 has been an event in which 50 different people have participated, so you may read some different point of views… But that was the richness of this event: all together as equal to fight against digital isolation and hopefully build something in which everyone feels confortable, understood and identified: from patients and their families to pharmacist and journalists!

At the end of this article I will be adding other  posts published by other sherpas (participants in this event). Menarini will also be publishing a formal document with all the conclusions and information. However all that will be in Spanish… Oh well, we got Google Translator, right? 😉 In that way you will be able to live the experience of #sherpas20 from all points of views!

What is “Together Against Digital Isolation”?

As we all sure can see there is a gap between the different agents that belong to the health world.

Us patients, for example:

  • cannot usually understand the technical lenguaje used in web pages that are related to our illness (at least this is something that happens if you look for information in Spanish),
  • it is difficult for us to distinguish which internet resources are reliable and which are not when we surf the web for health related information,
  • there is no one we can ask in social media, email, web page or digital platform (again, this happens a lot in Spain and it is something that needs to be changed. Patients and families need a reliable place so that they can ask and get the right answers and in the right time).

Above all, this digital gap means that patients go one way while the rest of the health system goes another complete different way… This gap is, in a few words, the vision we patients have: we hear everywhere, from politicians and other agents that “everything is made with the patient”… but we don’t see it happening…

All what we see is that health policies, health congresses and everything that is related to health is presented to the patient once it is done… Why not take us on board to see what we need and what we think? Maybe we can give some good ideas on how to spare some money… Maybe we could contribute to making better policies and digital platforms in which we all feel included and heard.

Well, these are the “little complaints” patients have… Maybe another health sector have the same or similar complaints and, maybe (why not?) we all are willing to fight that gap by working together…

Crazy, right? Putting together doctors, patients, journalists, pharma companies, pharmacists, physiotherapists…

Nuts! No one has ever thought about doing such thing… until now ;-). The pharma company Menarini, with Mónica Moro leading this beautiful “craziness”, has launched this project so that e-health is universal and accesible for everyone.

How can we define the digital isolation and how can we break it?

Yesterday in the #Sherpas20 event 50 people worked together to find a definition that fit us all, so we will have to wait for Menarini to publish the official document in which a representative from each group will work.

By digital isolation we mean the existence of a gap in the learning, use and application of new technologies and digital e-health tools caused by lack of access, knowledge and/or social isolation.

All that is what triggers the digital gap, which is the difference between the people who have access to internet and can make use of the services offered in e-health and those that are excluded from these services just because they cannot access the internet (for whichever reason: lack of access, knowledge and/or social isolation).

In this project we want to put an end to that gap by working together. “Together against digital isolation” has put together a team of 50 people that belongs to each one of the scopes that form the heath system: doctors, pharmacy, mix, communication, patients, pharma industry, health institutions, scientific societies, nursery and physiotherapy. Each one of them where identified by a color as shown bellow.

Captura de pantalla 2014-11-05 a la(s) 01.40.46

Each team was compounded by 5 people so that everyone had the same representation. As a leader, a Sherpa! Which is the wording that has been chosen and that fits perfectly to the project: we all together, with good guidance, will reach the highest. And that is a point in which everyone is included in e-health :-).

 

Who are the sherpas?

May I introduce you to the Sherpas!!! 10 people, each one of them representing the groups shown above. Very professional and high quality people that live with the passion and drive we need for this project to go ahead. Whoohoo!!!

la foto

 

The rest of the people that complete the 50 people picture have been humble “explorers” until the end of the event. From yesterday evening I am also a sherpa!!! And all attendees received a gorgeous cap as a certificate :D.

Nuria #Lupus on Twitter

YaSoySherpa! 😀 #sherpas20pic.twitter.com/FzqlXKLdo6

Welcome and explanations: What exactly are we all doing here?

Yeh right, we all were so excited… but no one had a clue of what we were going to do!!! So we got the answers to what digital isolation was and how we were supposed to end it up. And that is…

  • By a multidisciplinary approach
  • By a non endogamous approach
  • By reaching out those who “cannot climb the mountain” (that is, universal access. No one is left behind in #sherpas20!)
  • By analyzing what causes that people do not jump into the e-health
  • By listening and understanding the obstacles we will find on our way.

At least by what I saw yesterday all this is being done. Every point of view has been taken into account and each one of the attendees had a voice (and a valid one! :D) from equal to equal. In #sherpas20 no one has been on a higher step that another person. Bravo!

Work group 1:

1.- Discuss what is digital isolation.

For the fist working group, that lasted 40 minutes, we were divided so that each group had a representative of the health system. Doctors, nurses, patients, journalists… discussing about the digital isolation definition that I mentioned at the beginning.

Did we all agreed in the definition? What would we change?

For instance, I did not agree with including isolation in that way… From many patients point of view social media is the way we can get out to the world and reach another patients, find information o someone whose words make us feel we are not alone.

When I felt at my deepest I got into social media… I did not have the strengh to shout out loud I had lupus (and I needed help) and the possibility of being anonymous in twitter made me get out there. Social media also gave me the time I needed to take it all easy and at my own pace… Until I felt ready and got out there to say loud and clear “I am here!!!!”.

Another health specialists made another suggestions by saying that people don’t use social media because they don’t think it is useful… Which is a shame because a tweet or a hashtag can be very powerful and viral!!!

2.- Which are the causes and factors that trigger health digital isolation?

Group 2 (my group) got the following causes of digital isolation:

  • Lack of knowledge- We don’t know how to use social networks or we don’t use them well.
  • Lack of motivation- We don’t think we can change the world using 2.0 tools.
  • Lack of support/interaction- if a patient interacts in social media with a patient association and don’t get an answer he/she will feel discouraged and will end up in the digital isolation.
  • Lack of promotion by agents and health entities (doctors don’t prescribe links to their patients).
  • False miths: “I will lose my privacy”, “I don’t have time” (when e-health is a powerful tool that can save a lot of time and money to all health agents)…
  • Fear of “destroying” or harming our image (doctors of course can share a picture in a bar and a patient can share a video dancing sevillanas. That does not mean the former is a bad doctor nor the latter is lying about his/her medical condition and symptoms.

We also observed a sociodemographic and generational factor that affects the access to 2.0. People from a certain age cannot access internet easily and maybe more resources are needed to stop this from happening.

3.- Is there enough people to develop digital health projects accesible to everyone? What about resources? And attitude? 

All of us agreed: there is enough and very good and reliable people to develop anything!!! Although we would add that there is also a lack of interest from the principal agents. Maybe they don’t believe in e-health or they’d rather work on their own searching their own benefits.

There is also a lack of collaboration that extends to the rest of the society because “health is not an issue if you are healthy”. More implication is needed and that is something that I don’t see in Spain at the moment. Why in the USA you can see thousands of people running for lupus and in Spain we don’t even show up for world lupus day?

Personally I loved this sentence:

“If you don’t care about it you will not take take to look at it”.

Gosh that is sooooo true!!! Nowadays a lot of things can be done from home… And only 30 minutes from your time can do wonderful things for a lot of people. Only 30 minutes of your time could change another person’s life. I have no words to explain how it feels to be able to help.

4.- Where does e-health stands today in Spain?

As we say in Spain… In diapers!!! And nearly all 50 of us thought the same…

5.- Do we think e-health is a strategic priority for Spanish health administrations?

Unanimous answer: e-health is not a priority… and it is something that will save so many resources and would be so good for people!!!! We would gain in both health and quality of life!!!

6.- Are there any differences in the way e-health is used in the whole territory of Spain?

Again, we got an unanimous and clear ‘YES’. In Spain the e-prescription is only available in some cities and the development of school patients has no yet been developed in the whole of the country (and we do not know if the government will invest on this).

 

What was said in other groups?

I know… If you cannot speak Spanish you will not understand a thing, but I think it is nice to see some pictures 😉

la foto 1

Captura de pantalla 2014-11-05 a la(s) 02.41.21 Captura de pantalla 2014-11-05 a la(s) 02.42.19 Captura de pantalla 2014-11-05 a la(s) 02.49.49

 

I got truly surprised to see we all agreed in so many things!!! It did not matter if it was a journalist, a patient or a nurse: there are a lot of things we think alike! And that tells us we all have the same objective :D.

 

Let’s go for the second work group!!

This time patients were together in the same group and so did happened with the rest of the specialists in e-health. I think the results from these work groups will vary depending if we talk about the nurses group, the journalists group or the pharma group. That is why it will be interesting to read Menarini final’s document.

During 1 hour we all discussed about the following:

1.- Why reduce the digital isolation?

– To gain in health an quality of life.

– To create empathy among the different health actors, breaking barriers so that society can see the patients reality.

– To improve e-health strategies and policies (if they are “done for the patient” they should include the input of patients).

– To use big data in e-health by using a bigger sample as a result of a bigger participation in digital platforms. This could led to interesting studies that could generate new strategies and policies or even improve the existing ones.

– So that we all have access to the information regardless of where we are. If we break the digital gap we will be able to follow an event by using a hashtag, by streaming or thank to bloggers.

2.- What will we get in return?

The reasons why we patients want to end up with the digital isolation are the benefits we will get if we do it: more health and quality of life, empathy, universal access…

3.- 5 digital resources proposal.

– e-learning resources so that everyone can have the chance to learn regardless their level of knowledge.

– Social communities.

– Blogs (although we think these should be recommended or “prescribed” by a doctor or specialist. Google is not always the answer!!!)

– Recognised scientific and medical websites.

– Gamification (learning by playing).

Once again, some picts of our work!

la foto 4

 

Wearables were also mentioned, as well as Twitter and other social networks. And… look at this piece of art from our doctors!!! The picture says “no one knows more than we all together”. Ole ole and ole for our doctors!!! You can see them all in the 3rd pict :D.

la foto 1-1 la foto 2-1 la foto 3

 

After a great meal that we all deserved…

Last work group: by social networks!

One whole hell of a brainstorming to define 10 steps that every e-health project should follow to be successful. Difficult job to be done in an hour! But we all got to do it, yeheee!!

Although in this last group we all were mixed up again we all agreed in two things: all health agents must be involved from the very beginning and, secondly, regularly follow up meetings must be taken for everyone to be updated and be able to give a feedback.

Prensa Menarini Esp. on Twitter

Hojas de ruta: pasos a dar en inciativas #eSalud #sherpas20pic.twitter.com/PzivQ0wjMF

 

Analysis and discussion: 3 digital projects for patients, specialists and institutions.

We were given three real e-health projects that we studied and evaluated according to a guide of 20 points. I am not going to tell you about it all because… Well, it is solo difficult! And I would probably have to be here until tomorrow to explain it all…

Nevertheless, I would love all of you to take a close look at this concept that has been developed by San Joan De Deu Hospital: Liquid Hospital Proyect.

I have not found a picture in Spanish… Sorry!! :-/

Captura de pantalla 2014-11-05 a la(s) 04.10.58

We are now sherpas!!!

May I introduce you to the 50 people I had the pleasure to work with yesterday. It’s an honour to have met all this wonderful people and I really hope we see each other soon in another #Sherpas20 event or another! Of course, we all meet everyday in social media because there is no digital isolation for us. Why don’t you join us?

Thanks to Menarini, Mónica Moro, Patricia Santos (my sherpa!) and the rest of the people behind “Together against digital isolation” for counting with me for this project!!!

Captura de pantalla 2014-11-05 a la(s) 03.31.19

 

If you want to know more about this project:

– “Against digital isolation website“.

– Take a look at #sherpas20 in social media.

– Read what other sherpas are blogging!!

 

 

 

 

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