The Shift Towards Patient-Centered Healthcare | Anders Vege of the "What Matters to You?" Movement

She says, I have decided today that I will meet all my patients with this question because I think it's important. So what matters to you? The really strong farmer, the silent guy, he starts crying with his whole body. He responds, never have anyone asked me that question before. Then, like a miracle, he changes in his face and he says, I would like to spend one more night at the cabin. What he told his doctor, what he told his wife was, actually, I know I'm going to die, but I would like to spend the last days of my life together with you, my family. And the miracle that comes is that it's a completely different health care he's introduced to, and he's staying within for the last 21 days of his life.

Welcome to the Mental Health Entrepreneur Podcast. We are here to inspire creative ideas and connections for entrepreneurs and advocates working to address our mental health crisis. As you listen, I hope you will experience new ideas and motivation to innovate in your business, your community, and in your life. Welcome back, everyone, to the Mental Health Entrepreneur Podcast. I'm your host, Rachel Harrison, and today I am eager to hear from Anders Vege. He is the senior advisor in the Department for Quality Improvement and Patient Safety at the Norwegian Directorate for Health. He is also an advocate for the what Matters to you movement. Anders, welcome.

Thank you so much for having me in your podcast. I'm very proud of you.

Absolutely. We just want to highlight today that Anders is graciously speaking to us in his second language, not his native language, if you want to say anything about that. Anders, what would you like to say?

I would like to say that I'm a little bit sorry for not using my first language because I would have more words and more precise descriptions with my first language, but you wouldn't understand anything of Norwegian, so it's better be English.

We appreciate that. And you get all the graces, so take your time. So I'd love to talk about this movement. What matters to you, that movement? Can you talk about what it is? How would you describe it?

Oh, it's not easy to describe, but I think it's better to start with the beginning, because back to 2012, two persons, Michael Barry and Susan Edgman Leviton, wrote an article about shared decision making in healthcare. It was in New England Journal of Medicine. And Maureen Bisoniano, at that time the president of Institute for Healthcare Improvement in Boston, usa. She was on her way in a plane to Paris to speak at the conference. I was there at that conference and she came on the stage with a complete new presentation because that Article changed her mindset. And I remember especially one phrase. It's all about moving from what's the matter to what matters to you. When I heard that, it was like she was talking to a national program that we were on our way to launch in Norway. We were going to create better pathways for elderly and long term condition pathways built on a pilot that we had some years ago, very successful with key activities, most activities in the home for the person pathway. Second intervention was to change the direction of healthcare. We were trying to work more health promoting, starting to focus more on better health, better functioning level, better coping in daily life. So that article and that presentation from Maureen completely took me to a new level. So I went home and I talked to my colleagues who were starting this program and we said we have to put this into the key concept of our work. It was about to start learning networks all over the country about those two interventions, the system and the change of direction. So we came to the first learning networks gathering and we introduced it's all about moving from what's the matter to what matters to you. And I think it was a room with approximately 200 persons, healthcare professionals, leaders, doctors, nurses, occupational therapists, physiotherapists. And I would not lie if I say everyone in that room felt this is really, really important, we are going to go home and change our work. And you've probably been to a conference and you felt that this is really it. And you go back and you introduce it like it's the new really, really hot stuff and you see the eyes of the person sitting there and you don't get in contact. So we had improvement teams gathered in that presentation and they went home and introduced. It's all about moving from what's the matter to what matters to you. And they were very disappointed. People reacted negatively. Actually it was two things. The first was we are so busy in our work, so if we ask our patients what matters to you, it will create a tsunami of needs and wants and it will create a pressure on the service that we can cope with. And according to the reference, it came from shared decision making. It's actually opposite. If you ask what matters to you, it tends to get a more conservative approach. And it's small details in life that really matters that comes up. It's things in a person's life that we cannot see because we are there as a nurse or as a doctor. And we see it with a doctor's eye, with a nurse eye. And that is our perspective. But this person centered perspective creates a different Dialogue and also starts a different service. So the tsunami thing was not a real thing. But the other thing that they felt not so good about was it's too big question. What matters to you?

Too broad?

Yeah, too broad. What do you mean by what matters to you? In what area, in what kind of direction? So we learned something important very early in this approach, and that was that we had to make context very clear. So you are at the hospital and you're going back home. You have to ask what matters to you when you're now moving home again.

Oh, I see. Okay.

Yeah. So you are in a hospital and it's important to say you have come to us, we've been here. So the acute situation is handled what now you are here, what matters to you when you are here? So finding the right context was very important. And still there were a lot of doubts about this new approach. You know, we are educated and we are trained to ask what's the matter? And that is a very different question. It's not too big, too broad. It's very concentrated on details to find where does it hurt? Does it hurt here, here, here? And the other thing is, you say you have a functioning level drop. What does that mean? Is it like this? Is it like this? So you are very concerned about details when you ask what's the matter? And what you find could be a diagnose valuable for starting a treatment. And you can find defined loss of functioning level, very important to start a treatment. But it doesn't necessarily motivate the person we are in relationship to that they have a diagnosis that they have a functioning loss. Because life can be very hard, very difficult, and it could be at the same time you feel tired, you feel exhausted in life, so where do you go? But asking what matters to you invites the healthy person in you to find what really, really is important in your life, what motivates you, what can start something. And we could sit here for days talking about stories. After this change in Norway and many other countries, it really, really creates a different service and better outcomes. But what we saw in Norway, that this was really a huge cultural change because people are trained and educated to ask different questions, right? We are not educated and trained to ask what matters to you. Occupational therapists are a part of the physiotherapist treatment is about that. But in healthcare, there are a lot of nurses and a lot of doctors who are trained to ask what's the matter? So this was the start of the whole thing. We have now been in Norway and the 4th of June in Norway, we decided to get attention to the question and we said to the people in the learning network, would it be better? Would it be good for you even if we created a what matters to you day. So 4th of June 2014, we had our first what matters to you day. And I came back to different situations internationally. I met Maureen again. We talked about what matters to you day. She was excited. I was invited to Scotland to speak at a conference about our learning networks and the program with the Pathways and challenged the Scots to join in. And at the same time, in Paris, a lot of people from Scotland were sitting, listening. And Jennifer Rogers, she went back to the children hospital she was working in and introduced what matters to you with children. And it was how they changed the atmosphere in the wards and the safety. It was a complete change of being home at the hospital because they brought this question into the daily routines. So the Scots said, yes, we would like to join you in what matters to you day. And Maureen introduced it to conference. And could you believe it? From 2014, a learning collaborative in Norway, run by the Norwegian association of Local and Regional Authorities and the Public Institute of Health that I was working in, financed by the Norwegian Ministry of Health and Care Services that was local in Norway. And in 2020, we had 50 countries being part of the global movement, the what matters to you day. We have moved it around for different dates, so it has to be Tuesday, Wednesday or Thursday. Easier to organize at work. Right there you have the stories about the what matters to you movement and the day the movement are 10 people from six different countries meeting once a month, planning a monthly meeting for everyone who wants to join us. And the 10 persons have different backgrounds, but we share a burning heart for what matters to you as a driver of better coping and better functioning level in healthcare.

To me, part of the shift in this is moving from just the physical body to taking into consideration mental, emotional, spiritual sides of people. Right. More the whole person rather than just the physical ailment.

Absolutely. It's very much about that, from being a patient to being a whole person.

And I'm wondering, have there been any studies or anything to show that people's healing goes better because of that their physical wellness goes faster? Maybe because of integrating mind, body, spirit and who they are as a person.

We have not set up rigorous science on this. So what I can talk about is a lot of stories, storytelling, I would love to hear. I maybe should start with the first meeting that we had with this. We had a doctor in the middle of Norway in The middle of our country, long waist country. And she was sitting 4th of June, 2014, on duty. This is the first generation badge saying, yeah. Which is what matters to you in Norwegian. So they took this on their uniform and they decided four or five persons from the improvement team, today we're going to meet all our patients with what matters to you question.

Wow.

She went out to the cafe in the center of this institution where she was on duty, and they had acute care in the same place. So half an hour later, a person comes in the door, and he was followed by his wife. And she immediately recognized a farmer. A farmer she knew very well as a person, and she knew that in October, the former year, he had the diagnosis of lung cancer. And she was really, really shocked when she saw him, because she saw that this has moved extremely fast. This is in a terminal phase. I can see the pain, I can see the lack of rest, the bad nutrition situation. I can see that he's dehydrated. So a lot of clinical stuff came to her head.

Yeah.

And that clinical stuff was about, what's the matter.

Right? Yes.

So she thought first, well, he's too ill. I have to go to the clinical questions with him immediately. But it was, let's say, 20 steps from the meeting point to the office. And in that 20 steps, she changed her mind again. And she said, well, he too, he should have question what matters to you as well. They sit down in the office and she tries to explain and kind of apologize for asking. She says, I have decided today that I will meet all my patients with this question because I think it's important. So what matters to you? The really strong farmer, the silent guy, he starts crying with his whole body. He responds, never have ever anyone asked me that question before.

Yeah.

Then like a miracle, he changes in his face and he says, I would like to spend one more night at the cabin. They had a cabin. And I learned three years later that being a farmer in this part of Norway, when you say you're going to the cabin, it's the only occasion when you actually talk to and spend time together with your family. Because farmers in this region, they work, they eat and they sleep. They go to this very simple cabin and stay there together with the family. And at that place, it's about family attention.

Yeah. Yeah.

So what he told his doctor, what he told his wife was, actually, I know I'm going to die, but I would like to spend the last days of my life together with you, my family. This island farmer didn't have those words but he could say one sentence, I want to spend one more night at my cabin. And everyone understood him. And the miracle that comes is that it's a completely different health care he's introduced to and he's staying within for the last 21 days of his life. He died 24th of June. And from 4th to 24th, the healthcare he had was spending his night in this institution, but all day at his farm, together with his family and with grandchildren and his son working after him in the fields. And it's actually, it's a little miracle of really, really good health. Last 20 days of his life was good health because he managed to finish his life in the best possible way together with those who loved him and those he loved. And we've been talking a lot about this example since it happened, because the cost for healthcare was actually very much red reduced by this question.

Interesting.

Because he stayed with his family and he had some home care coming, making sure that he got the right medicine, painkillers and all that. But only the nights in the institution. And if the doctor didn't ask what matters to you, he would move in because that's how bad he was. In his condition, he would have moved into a nursing institution. Cold white room, no invitation to spend the last 20 days talking to his family. Wow.

Well. And at a place that he loved and felt comfortable too. Yeah.

Well, this was the first story and it was told in the learning collaboratives. And we were all reminded that this is going to be the direction, the change of direction. We are going to start asking what matters to you, to all our patients, and we are on our way to that. It's not common yet in Norway, but it's used very much. And we have one tool that we have introduced. We stole it from Canada. It's called Patient Specific Functioning scale. And it's actually a very open tool with the possibility of filling in five things that really matters to you in context. So if you are in a hospital and you are really with a low functioning level, it should be about better functioning. Right. Putting your socks on, making your own coffee, all those practical things that has to be in order to move home. And. And then a very important thing comes with those things that matters to you. And that is the question, how well do you function when it comes to putting your socks on? Try to figure from 0 to 10. 0 is I can't do anything. 10 is I do it myself, no problems. So between 0 and tell, where would you say your functioning level lies? So then you have a precise description of Functioning, coping in your daily life, those things that matters for you, and you have that common with the health professionals. And you can start thinking, okay, we have the goal being able to put on my coffee, being able to put on my socks so I can get out of bed. And you have the level of functioning. So what kind of activities do we have to start? And those activities could be with healthcare, but it also could be with family members. That is the tool that we have tried to introduce. Sometimes it works. The measuring between 0 and 10 is hard for some. So if you have a low functioning level cognitively, it would be hard to make that one, but the family members could maybe help you to do that.

Right. This feels so relational to me. It feels like you're going from that medical professional, patient relationship, and then it suddenly becomes very personal and individual and like there's a relationship. As you're telling this story, I'm feeling that shift from shift to hope, shift to empowerment, shift to relationship. All of those things, all in that question. And that shift, that's a big shift.

Absolutely. So for a lot of reasons, we call it a change of culture. It's really a mind shift that needs to be addressed like a cultural change. And, you know, when it's a deep culture, which asking, what's the matter? That's very deep. It's a long tradition of medical care, it's a long tradition of nursing built on asking, what's the matter? And it's not wrong. It's a very important question. But it has to be followed by a different question. If we really want to invite the person we are having a relationship with, if we really want them to improve their functioning level and their coping in their daily life, they have to be a very active person in that relationship.

Yeah. And so I feel like you're talking about definitely applications in healthcare, but to me, I'm also seeing maybe broader applications. Right. In relationships, understanding all kinds of places. What matters to you when you are checking out at the grocery store or when you're at the library or. I don't know. That just feels like there's a much broader possibility here too.

Absolutely. And we've seen when people meet this change, a lot of people are getting associations to their own area where they work, that we have seen it being used in prisons with prisoners. When you're now on your way back to community, what really matters to you? I live together with Kaaria, the great love of my life, and she is a leader of an organization, Love Trestle Service, for young people in our hometown. In mental health, but not health care. Part of mental health, the services for young people in our community. So they have started a new program called Young arena and it has got a plus, and that is the hospitals coming indoor in the same building as the municipality services.

Okay.

And they have decided that they will meet all young people coming into this house asking what matters to you. There is a PhD in Norway inspired by the program we have had with what matters to you. And he has invited every patient on his list to have their treatment based on reflection on what matters to you. And it's a great work. And here everyone says that if you ask that question, you get much faster to what matters and what is necessary to really help the person who struggles with anything at home, at school, anything.

Yeah. Interesting application to think about the schools too.

Absolutely.

Yeah.

What I think, Rachel, is that this is about flipping the situation. I see it as it's a tradition in healthcare that we are the specialists and when you come to us, you kind of expect us to be the specialist.

Right.

And we are, but on a very limited part of the big thing that we are about to try to figure out. So trying to create better health, better coping, better functioning levels, those three things I mention all the time very much invites you into the conversation because you are the expert on what matters and you are the expert on when you try to do something with this earlier, what worked, what was successful and what is definitely not. So it's so easy to give the responsibility or take the role as the expert, but you have limited resources when you only have yourself as a doctor or a nurse.

Right.

The resource is on the other side of the table.

I love that. So we've got a wrap up, but what would be next? What would be the next thing for what matters to you or what do you want people to take away and know about this movement?

Oh, I would be very happy if it changed the relationship between health professionals and patients. I would really love to see that when you come to your doctor, to your gp, or to a specialist or to a nurse, that you come there to be part of a relationship where you are the expert on you and you have the opportunity to really make change happen in life and to really believe that change to my life, change is already within me. If I just find the right buttons to pressure and make sure that I get motivated, I think that matters to me. We are in a situation in Norway. We have a lack of health professionals and we have a growing population of elderly. So what I would like to see next is that we really take this better health, better coping, better functioning level to a new level, make it core business in health care, core activities, not only treat diabetes with medicine, but life changing programs that move the attention to what should I do to improve on my diabetes? Yeah, having contact with other experts that has the same disease and in all kind of areas. I think there's a huge possibility of developing not paternalistic healthcare system

empowerment for patients, for clients.

Absolutely.

Absolutely. Wonderful. Well, thank you so much for talking to me today. It has been an inspiration and a pleasure. Thank you.

Thank you for having me.