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By Isabela Castro, ISQua Fellow Thursday. Jun 6, 2019

What matters to you? The global movement and the patient’s voice Featured

ISQua Fellow and one of our 2018 ISQua/AGPAL Interns, Isabela Castro, has shared her thoughts on the 'What Matters to You?' movement. 6th June is the 'What Matters to You? day, which aims to encourage and support more meaningful conversations between people who provide health and social care and the people, families and carers who receive health and social care.


Finally, the day has come! June 6th is the official day of the global movement what matters to you? But do you know what this day means? Well, put simply, it aims to encourage and support more meaningful conversations between people who provide health and social care and the patients and families who receive health and social care.


In 2010, the then CEO of the Institute for Healthcare Improvement (IHI), Maureen Bisognano, based in the United States, was one of the first inspirational leaders to challenge healthcare professionals to have closer conversations with patients and family members.


In the same year, more movements began to take place in Scotland. With the support of a visionary local leader, Jason Leitch, two compassionate and innovative Scottish nurses, Jennifer Rogers and Shaun Maher, began to develop ways to find out what mattered most to their patients.


The first academic concept was initially introduced in an article of the New England Journal of Medicine, in 2012 by Dr Michael Barry and Susan Levitan. Instead of asking what’s the matter?, they’ve encouraged providers to ask “What matters to you?” to their patients.


In 2014, based on these discussions and context, Norwegian health professionals organized a system for older people with the aim to support them to live by their preferences. So, it was then that June 6th was instituted by Anders Verge, nurse and head of a Department of Quality Improvement, as being the official date of the campaign What matters to you?


In 2015, the movement became internationally recognized. Professionals around the globe began to share their experiences of conversations with their patients in health care settings, like Dental Care, for example. In the last year, more than 30 countries were involved, more than 2 thousand teams, and more than 15 million impressions on Twitter. Since then, this simple, but powerful question, has become a super tool to create a profound connection between patients and providers and this change has been taking hold around the world and is not just changing the balance of power between patients and care providers, but is also enhancing the patients experience and patient’s empowerment in shared decision making and in co-designing models of care.


I keep asking myself…Why something so simple hasn’t happened before? In my opinion, I think we’re running so fast and dealing with so much complexity and multiple demands in today’s world, and also in most health care settings, that I feel we move in an automatic “hurry up” way with our documents, meetings, results, performance and all that inspection data we have to deal with. Sometimes it is just frustrating at the end of the day to have that reflection that “ What have I done today for them” or ‘ I should have done more and I haven’t”. But… things change completely when you stop and have a real conversation and establish a deep connection with your patient. It can mean so much. It can be magical. Those 20 minutes may represent so much for them, and look at you! you are right there in this crucial moment for them, being able to facilitate their journey and helping them to higher levels of healing and quality of life. And how? Just because you listen.


What I mean is, it is never too late to remind our hearts why we wanted a career in health care in the first place and that we are all patients at a certain point in life. It is never too late to rescue our genuine vocation in caring for others and to have joy in work… So, the ‘What matters to you?’ question is our moment of pause and connection with our inner self to link our jobs with the main purpose of our professional lives. It can be something very powerful to patients but believe me, it's more powerful to providers and a bridge to reach the Quadruple Aim and meet our day by day improvement and performance challenges.


As a global movement, it’s been translated into multiple languages and can be asked in several different ways. In my language, Portuguese, for example, when we translate from the English version we have the question “o que importa para você?”  but asking it this way, by my experience in the country, it’s not immediately very well understood by the patient. So you can be creative to ask the same thing in other ways, after all, what is important is to establish a relationship, and to understand the person in the context of their own life and the things that are most important to them. No matter how you do it, this crucial insight puts you in a much better position to work with the person to find the best way forward for them.


I like these examples from the Scottish team:

  • “What are the things that are important to you at the moment?”
  • “What are some of the things you would you like to achieve as a result of this support?”
  • “When you have a good day, what are the things that make it good?”


Isn’t it curious how the idea and meaning translate so well, in different languages and a range of care settings? When you ask someone, “What matters to you?” you’re compelled to see them as a whole person and appreciate them as a unique individual who deserves respect and dignity, and not as it often happens, to refer to and treat them as a disease or an organ or a lab result.


The last thing that is important to mention is the relation between the ‘What matters to you?’ and costings in the health system. Compassion may lead to cost reductions when we think about shared decision making as a drive to the alignment of expectations. Compassionate communication by itself can help to avoid aggressive procedures, foolish manipulations and unnecessary exams, and other cluttered systems triggers, which in turn, compromise sustainability of the health system.


After reaching the end of this blog I hope that you, can see in the question   “What matters to you?”  in a way to lead change in the health care system.


So if I could leave you a message of encouragement, it would be - do not wait for perfect conditions, but the opposite, start today. Yes. Now. In the next shift. Talk about it. At the bus station. At the church. At the supermarket. With your peers. Ask the question. Start with you... Be the leader of yourself, and someone who your community needs. Establish the connection. Listen. Learn. Change your system in your small world and see what your work will be able to do in people’s lives. Be brave.


Much love






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