Founder of the Health Story Collaborative
Instructor in Medicine, Harvard Medical School
There's a lot of talk around humanizing health care and hospitals, but there's not a lot of action. How can we use these stories in an action-oriented way to actually increase humanity and connect people?
By Heidi Legg
America’s health has a big question mark on it these days. The health of the economy and the people, the mental health of the society and its leaders; even Presidential candidates’ health reports became part of the heated election. Big pharma, drug discovery, opioid addiction, incarceration for drug possession, legalized marijuana, Obamacare (also known as the Affordable Care Act), aging boomers, draining Medicare, draining swamps… Honestly, it’s enough to make my head spin. Is America sick? And if it is, why?
To try to change the health care system in America is colossal. We’ve heard this from many past interviewees all trying to move the needle: Rushika Fernandopulle transforming primary care with Iora Health, Jonathan Bush transforming how doctors bill insurance companies using athenahealth, John Moore transforming how patients with chronic illness check in with their doctors, David Ting ensuring digital medical files are secure with Imprivata, and Debbie Gordon became an Eisenhower fellow to look at how other countries shop for healthcare. But are there also simple steps, subtle changes that can start to turn the tide as we watch policy-making drag on and America’s health plan revamped once again in Congress? Can returning to what has been lost really have impact?
Dr. Annie Brewster, a Harvard-trained internal medicine physician and educator, believes listening to patients is the tonic. That the reduction to 15-minute visits with your doctor has bred a tension between patients and practitioners. In light of this, she began Health Story Collaborative (HSC), a small but growing nonprofit organization in Boston, MA for families affected by illness. Dr. Brewster is also a patient, living with Multiple Sclerosis since 2001, and HSC is a response to her experiences, as both a patient and a provider, to the rampant disconnection between patients, their loved ones and the medical industry today. Supported by research, she is convinced storytelling promotes health, and she and her team are working to transform the insurance-driven culture in medicine today.
What are you focused on right now?
I always have a million projects going on with Health Story Collaborative: Our growing Audio Stories digital library, a Healing Art Archive, a Community Voices program, live storytelling events called Healing Story Sessions, and a new SharingClinic, which is an interactive hospital-based storytelling kiosk. It's a blessing and a curse, but it's an exciting thing. We have a lot of projects around narrative and healing, but the primary focus right now is called The Intimacy of Memory Art & Storytelling Project around opioid addiction and the loss of a loved one to opioid overdose.
Where are we missing the mark with the opioid epidemic?
I think there are a lot of ways in which we're missing the mark. The current project is focused more on people who've lost a loved one to opioid overdose. We're talking to the families and loved ones who are left behind to grieve a stigmatized loss. I think those people often get left behind because grief is complicated, in any circumstance, but in situations like this people think, ‘oh, that was just a drug addict.’ There's little space for grief.
We hope to actually prevent loss. In terms of what is missing in the opioid epidemic, I think treatment is not long enough. We have treatment that might last for a month, at most, and then people are released back out onto the street and there is nothing to hold them after that. We’re trying to do better work in terms of educating people about this, but the stigma of addiction in general perpetuates the problem.
You work in the Mass General Urgent Care clinic as well. Do you see the addiction problem often?
Yes, we do see a lot of opioid addiction. We don't see the overdoses coming because those go directly to the emergency room, but we definitely see a lot of people who are using and abusing drugs. Our practices have changed; the rules about prescribing opiates are becoming much stricter, which is a good thing. Public policy is trying to catch up and make some changes, but that's complicated because there are people with chronic pain who are on these medications who are no longer able to get them. It's complex.
How are you working with this community?
We are using art and storytelling to get at this issue and to work with people who have lost a loved one to opioid overdose. I paired up with a visual artist named Nancy Marks who has run workshops around grief and loss.
People who've lost a loved one to opioid overdose come to our workshops and make art collages using objects, memories, journal clippings, or whatever they have left behind from this person who's been lost, and then I interview each participant individually and audio record them. We ask 'who was this person that you've lost?' Not just as an addict. What was special about them? What do you remember about their childhood? What stands out most? This allows us to contextualize these individuals and these lives. These are people who were loved and who loved others back. We have done two workshops and our show was up for a month in Newton with the collages paired with the audio recordings. You can hear the stories while looking at the art.
How does this affect participants and viewers/listeners? How does it move the needle?
That's a good question. I think all of our work around storytelling, including the opioid project, is trying to move the needle. I think the opioid focus speaks to the fact that this is an active issue in our society. It's reached crisis level. This year, there have been close to five deaths a day in Massachusetts. It's extreme and it's continuing to rise.
We are trying to take the work that we're doing – that is more theoretical – into an action-oriented, applied vision and that's really my whole purpose. There's a lot of talk in health care around humanizing health care and humanizing hospitals but there's not a lot of action. There aren't a lot of steps being taken to actually concretely make that happen. I applied it to storytelling. How can we use these stories in an action-oriented way to actually increase humanity and connection and connect people?
Is this "Narrative Medicine?" As a doctor, why are you committed to this approach?
What I'm doing is not exactly narrative medicine. It's a little bit different and I think those differences are what fuel me. Narrative medicine is the study of how we use narrative to connect more and in a healing way. How do we listen more? How do we listen to people's stories? Historically, it's been more directed at training providers on how to do a better job of treating patients by listening to stories; how to understand stories and how to use those stories to better connect with our patients.
So narrative medicine is a tool for doctors, but not what you are doing?
Yes. It’s been more of a tool for doctors and is very important work. There's something in Boston called The Center for Narrative Practice that is expanding narrative medicine, not only to health care but to any field, asking ‘How can we use storytelling?’
Our work at Health Story Collaborative is more committed to actually creating programs for patients and patients’ loved ones, and sometimes for providers. I am more focused on the patients and their loved ones and creating opportunities for them to actually engage in storytelling work, to be listened to, and to create community events around that experience.
In health care today, there is often little time for patients to tell their stories because we are so constrained in these fifteen-minute blocks with our doctors. Nobody is really getting a chance to express themselves. In some fields it's better than in others. If someone's hospitalized, there's more room for storytelling and listening, but I'm more committed to servicing the patients and their families in an action-oriented, grass roots way on the ground - creating programs rather than more theory.
When did you know you were on to something?
It's hard to say that there was one turning point moment. It's been an evolution that's been going on for over ten years. It started percolating as an idea maybe as far back as 2001, because that's when I was personally diagnosed with MS. I was also a resident in training. It was a very intense period in my life, both in terms of being a medical resident and also in terms of getting this diagnosis. In retrospect, I see now these parallel tracks of my training as a doctor and my experience as a patient have informed what eventually became Health Story Collaborative.
As a patient and physician, I started to feel the limitations of the system from both sides. Once I graduated from residency and went out into primary care practice, I felt really sad and frustrated by the system. The structure of the system really didn't enable me to deeply connect with people the way that I wanted to, because it is so time crunched and because of the priorities of a hospital. Yes, we want to heal people as doctors, but there are all these other factors driven by insurance companies and it's not about deeply connecting with patients.
Is it that connection that drove you to this?
Yes, I wanted to know the patients because I jumped into primary care and inherited somebody's practice. All at once I had about 1,500 patients and I didn't know them and I felt like my entire day was structured around trying to stay on track. I had young babies at the time, a practice, and wanted desperately to connect with patients.
It almost creates this tension between patients and doctors. The patients are feeling like they're not getting their needs met because they're often not, and the doctors are feeling stressed and actually powerless because they're not able to engage and really care for people the way they want. That can breed frustration and sometimes even anger on the part of the doctor and then the patients feel vulnerable and scared and not getting taken care of and angry. There’s almost this antagonism that develops, very subtly, and I think most people wouldn't own that but I think it's there.
I started to notice this tension and that made me very sad and then, at the same time, I was navigating it from the patient side with MS. I really experienced what is it like to be in that vulnerable position: What is it like to be the one putting on the paper gown, sitting up on the table and feeling rushed? I'd say both of those things motivated me to start thinking about how can we make this better. What can we really do?
I'm not able to change the health care system by myself but I can create complementary ways to step into this and give patients an opportunity.
I started thinking about integration of illness and identity formation and what does it mean to get a diagnosis as a patient. How do we integrate this into our lives and move forward in positive ways without having it define us? How can I help patients do that? In the beginning, I was very ashamed of my diagnosis, which is interesting.
Why were you ashamed?
I don't know. It's strange. It's like I would never judge anybody for having MS, but I was somehow ashamed that my body was failing me. I was scared to tell people and I thought I would be judged and treated differently, which was true. You say ‘MS’ and people immediately think ‘wheelchair.’ There's a huge spectrum and it's so diverse in terms of how people do with it. I couldn't even incorporate that myself and accept it. Saying it out loud took years. There was shame that somehow I was less than. I didn't want to go to a support group but I was craving stories. I wanted to hear from other people who'd been given a diagnosis that was chronic and life changing and how had they moved forward. How had they integrated it, not ignored it, accepted it, moved on and continued to do positive things in life despite this challenge? I was looking for that and I couldn't really find it.
I decided to create a library for patients and in doing it, I realized the part that seems obvious but was sort of surprising to me – it is so incredibly therapeutic for the person who is telling their story. It’s not only the end product of the story library that exists for people who want to listen; rather, it’s this process piece that's huge. That was maybe the turning point – the listening and the sharing are together hugely therapeutic.
In 2010, the work started and then I created a non-profit.
What projects came before the Art and Storytelling opioid project?
We have a digital, audio library that's on the website healthstorycollabortive.org. We have live storytelling sessions called Healing Story Sessions which are a process for helping people to write their stories in advance and then present them 'live'. I work closely with a psychologist named Jonathan Adler, who is the Chief Scientific Officer of HSC, researching the health benefits of narrative. Jonathan brings a research focus to what we do.
In the Healing Story Sessions, we have a narrative guide to help people tell their stories. It’s about how people do this in a therapeutic way and it's informed by the research. We have them invite guests to come and witness their stories being shared live. These are live events where they share their stories in spoken word, but we also occasionally do those publicly.
We have a model where we have a patient and a provider share together, again to get at the shared humanity between patient and provider. We both want deeper connection and yearning. They sit up there together at the events and they haven't heard each other's stories but they're in a therapeutic relationship already, and then they both share and have a dialogue with one another. Those are really powerful.
What's the driving force: The digital library or the live events?
I think it's both. We've had a number of really successful and powerful live gatherings recently that have been open to the public in hospitals, and those have been great. I think there's a lot of power in those because we touch a broader group. They have become a therapeutic process for the people sharing but then there are these invited guests who are invited into the story, or if it's a public event, those people are invited into the story too and it creates a sense of connected theater.
We’ve also our SharingClinic, an audio listening kiosk. It’s a touch screen computer where you can interact with the content we’ve been collecting over time. We have almost 200 clips in our library and you can search it by disgnosis or theme. It’s now in the MGH museum on Cambridge Street in Boston.
Will repealing the Affordable Care Act affect the work you are doing or the work of primary care doctors in their ability to listen to their patients?
Health Story Collaborative is a response to the disconnection that is rampant in healthcare today. Repealing the Affordable Care Act will exacerbate the relational problems in healthcare, mostly because fewer people will actually have an established relationship with a primary care provider. They will never make it to the primary care doctor’s office. Without insurance, emergency room care becomes the default. People come in only when it is absolutely necessary, often in the midst of a health crisis, and without a known provider engaged in their care. So if the ACA is repealed, medical providers will be less able to listen to their patients, simply because the relationships won’t exist. This will undoubtedly increase morbidity and mortality, and ultimately increase healthcare costs.
In my clinical work as an urgent care provider, I will likely see sicker patients but otherwise much of what I do will stay the same. In terms of my work with Health Story Collaborative, repealing the Affordable Care Act will only intensify the need for the programming we offer. I wish this weren’t the case.
What percentage of a doctor’s time goes into seeing patients versus billing and entering patient notes into computers?
According to recent research, less than a third of a doctor’s workday is actually spent on direct patient care. Many of the healthcare reform “improvements” we have seen over the past decade have only decreased the face to face time between patient and provider. I can tell you first hand that I am forced to spend a lot of time interacting with my computer when I have the patient in the room; viewing medication lists, past notes, ordering labs, ordering x-rays, etc. And I make a concerted effort not to do this. Sometimes it is impossible. This alienates patients.
There is a focus on quality in healthcare these days, which is great, but most of the quality measures are misguided. There are more and more hoops to jump through, boxes to check, and so on. Quality measures often — usually -- have nothing to do with strengthening the patient-provider relationship and they become just another barrier. Instead, in my view, this relationship should be at the forefront of all healthcare reform. This is where healing begins.
If the Affordable Care Act were to be maintained, I am not sure it would ultimately lead to more face to face time between patient and provider. It is too early to say, and the intricacies of how the plan might do this is beyond the scope of what I know. I do know that it has allowed more people to have a relationship with a provider and actually receive care. Period.
Do you see any solution to making more time to listen?
Oh how I wish I had a simple solution! Fewer patients for each provider and therefore more time with each patient for starters, but I am not an economist and can’t tell you how to make this financially viable. As I have said, Health Story Collaborative has been designed as a complimentary treatment modality to fill this relational void, to bring humanity back to healthcare. We definitely need to keep working on improving what happens in the doctor’s office, but at the same time we can and should embrace programs to make patients feel seen, heard and understood outside of the actual patient-doctor visit. Connection heals.
Where do you want to see money allocated to change health care?
Ultimately, I fundamentally believe what we need is more time for each patient provider visit. That is going to require a shift of the entire payment structure of health care. I think it would solve everything if we had more time for connection and again there's a lot of research that shows benefits. People feel like they're rushed. There are more lawsuits. There are more doctor visits. They're not getting what they want. They come back more and more. This ultimately increases the spending and more tests are ordered.
What if there was a Health Story Collaborative in every hospital?
That is exactly what I'm trying to do. Ultimately, if I could change the structure, that is what I would change. I would give more time for each patient visit and fewer patients for each provider so that we could know their stories. That is not going to happen anytime soon and if we can, as a complementary model, offer these other programs so that you go to your doctor, you get what you need there, and then you have ways to tap into the story.
Take our SharingClinic we’ve designed. We should have this kiosk and clinic in every waiting room so that people can hear stories and feel like someone else went through this and think, ‘I am not alone.’ We need to value that more.
We just did a great live event for the palliative care department last month at MGH and we had a provider and a patient do an interview. Afterwards we started brainstorming with one of the directors of the palliative care program about how we can we utilize this more in the hospital to prevent physician burnout and to heal the patient provider relationship. How can we use these stories and what can we do to give patients more time? I'm hoping more and more we can bring it into the hospitals, and I've also been talking to some religious congregations about how we bring it into the community there. Can we have a healing story session in this church? Why not?
What public opinion do you want to change?
I think the number one public opinion that I want to change is that illness is somehow a weakness or at all a negative thing. Yes, no one wants to get sick, but I do think there are a lot of strengths that come out of having an illness and having to navigate a health challenge. For instance, I was so mad in the most recent presidential election when Hillary Clinton had pneumonia and it was made into such a huge scene that was used against her. Instead of "gosh, this woman powered through and was out there with pneumonia. How amazing that she pushed through that and was so strong," it was "she's weak. She's unhealthy. She's less than," because she had pneumonia. As if it was some big black mark against her. It's not a weakness.
There is stigma around some illnesses. Obviously addiction is much different than having Cancer, but I want to get away from all levels of stigma. These are human beings and there are struggles that people are going through but, ultimately, we all have struggles and we can't control what happens to us. We can control it a little, but there are a lot of things we can't control. We can try to make healthy decisions and people who do that still get sick. What we can control is how we deal with what we are hit with, and how we choose to move forward with those challenges.
We are trying to empower patients and health care providers and family members to find the meaning when confronted with illness and with challenge through storytelling. How can we make meaning through storytelling?
This thing you built is gaining traction. How does that feel? Is this only the beginning?
It feels great to be getting some traction and, honestly, I feel like to get this off the ground and to get this going I've had to step outside of the medical system in order to actually innovate and make this happen and now I'm trying to step back inside.
I think there are so many restrictions in health care and so many fears about litigation and privacy, which are really important. Sometimes in these huge institutions, it's impossible to get anything done. So, I had to really separate myself from that and start HSC completely outside of my connection to Harvard Medical School and the Harvard hospital where I work. Now that it's going, I can think about ways to weave it back in.
That's natural. Google has Google X for that reason. As a media startup, outside a media parent, I have been able to be much more nimble to show what is possible as part of the digital disruption. Is it the same for you?
Yes, I had to move out. I still feel like I'm slogging through on a lot of days, but I'm committed. I don't feel frustrated. My heart is so in this and I believe in it. There are days when I feel like I'm moving the needle, but it's really slow and it's very high intensity with a smaller number of people, but that's important to me. You can scale it up with things like SharingClinic but with some of it you can't go big, and maybe that's okay. I feel like I keep moving forward. Even if I'm touching a few lives really deeply, and I know it's more than a few, that is important to me. But there are days where I feel like I'm swimming against the current a bit.
Health care is so huge. How do you approach it and narrow down how you can make a difference in such an enormous industry?
It’s person by person. It’s making someone feel less vulnerable or more connected or bringing a community together or inserting something into a dynamic that then gets carried forward. When we have a Healing Story Session, everyone that was in that room witnessing the Story Share brings it with them.
One thing I like to think about with Jonathan Adler's research is that it shows how the stories we tell and the way that we weave together all of the events of our life and make meaning, shapes who we are. It's this ongoing continual journey. It's never stagnant. I think he said once ‘It's a subjective endeavor with objective ramifications.’
Jonathan also wrote in one piece ‘we are both the main characters of our stories and also the narrators.’ For me, it's empowering that these stories aren't only something that's happening to us as the main character. We can actually narrate them and shape them. It’s a big responsibility to realize that I have the power to shape my story. That doesn't mean every day I'm able to see the redemptive pieces of my illness, but it means that when I step back and reflect on it, I'm able to pull out those redemptive threads or find the agency. Sometimes you feel sad and confused about it and you can't see those pieces, but in the bigger picture you're able to make meaning and shape your story and have that control.
The stories are so heavy and powerful. How do you process that?
They're heavy but I'm always in awe of the people that are living these stories and moving forward. I take away more inspiration and hopefulness, and I think it's a huge privilege to tap into that sense of connecting and meaning and authenticity with people and to really be in it with them.
Where do you go to regenerate?
I take my dog for walks around Fresh Pond or walk with friends. Going to New Hampshire restores me, being out in the woods and being with my family restores me. What I love about this work is that it restores me. It is rejuvenating to engage with people in this really authentic, meaningful way.
How do people interested in sharing their story or listening participate?
If they go to the Health Story Collaborative website www.healthstorycollaborative.org they can do all those things and find my contact information. We're always looking for people who want to bring these projects into their hospitals or their communities and also for people who want to share their stories. We do get a lot of submissions for written stories and we can't take them all but we take some for our blog.
We also have a Healing Art Archive on the website. We feature artists who are using art as a way of telling a story about illness and healing. There are lots of ways to be involved with us if you check us out online.
You strike me as a journey person, not a goal person.
Yeah, I like journeys. I like the journey.
I hope you can scale the SharingClinic in hospitals. That sounds like a no-brainer.
Me too. Thanks for listening.