S3-Episode 5: Co-designing digital health systems with patients and families

PK 00:28

Hello, listeners, welcome to another episode of info matters. Thanks for tuning in. Before we start, I just want to let you know we’ll be talking about issues related to addiction, trauma and mental health that may be distressing to some listeners. It’s widely understood that the social determinants of health like one’s income level employment status, education and social supports are among the essential building blocks that shape our health outcomes. These factors like the physical environment we live in, and the communities we’re a part of play a big role in how healthy we are as individuals and as a population. Family support to can shape individual’s physical, mental and emotional well being, influencing our lifestyle choices, support systems, and access to resources. Healthcare professionals recognize the vital role that family members can play in supporting their loved ones throughout their healthcare journey. In fact, family involvement is now increasingly seen by health care providers and policymakers as a crucial element not just in individual health outcomes, but in the development of an effective and equitable health care system as a whole. My guest today is Betty-Lou Christie, Chair of the Health Ministers patient and family advisory council. The patient and family advisory council provides advice to Ontario’s Minister of Health on key health care priorities that have an impact on patient experience and patient care. As chair Betty-L0u has been an outspoken advocate for the co- design of healthcare systems, ensuring that patients, families, caregivers, and those with real lived experiences have a voice at the table when it comes to developing policies and structures in the health system. Betty-Lou, welcome to the show. And thank you so much for taking time out of your busy schedule to join me today. And thank you for having me. So to begin, can you share with us a bit of your own personal background and the journey that led you to the kind of work you do today,

BLK 02:33

transforming the healthcare system towards one that’s more integrated, and particularly more humanizing has been my passion for a very, very long time. I’m a brief mother with a background with both mental health and very long arduous journey through addiction to alcohol and drugs, and trauma. And my late son Pete dealt with a lot of first episode psychosis, we have a lot of bipolar and schizophrenia in the family. And he was self medicating too, and he got addicted to opioids. And unfortunately, Pete died December 23 2001, of an accidental opioid overdose a mixture of that with his new psychiatric medications. Pete died 21 years ago, we were losing our children 21 years ago to opioids. So in the context of health care, the conversation is more along the lines of the last decade, where the reference point is actually the last two decades. So that’s where it became really prevalent for me, I think, both for my late son and myself at our different juxtapose journeys, was the amount of stigma discrimination, bias judgment, well within the health care system, as well as society in general, which made it very hard to have our meets Nat and to continue to try to fight for ourselves. I fought really, really hard as anybody would for your child and I wasn’t being heard. And a lot of times, I wonder if that’s because they knew of my background as well. So I think that’s where Pete gave up. He just kind of, although it was accidental, he gave up because he just felt so dismissed, you know, as a addict, quotation mark, I hate that word. But that’s the label that he was given. And that really interfered with maybe the amount of help and guidance and health care he could have gotten. If it was not actually in the field of you know, addiction because it’s looked at as a lifestyle choice. it’s looked at as as a moral failing, and it’s actually in reality, on health care issue. So, as chair of the ministers patient and family advisory council and a lot of our members, we really want Want to humanize the system. So that’s part of the journey that landed me in this position.

PK  05:06

I appreciate both your courage but also your generosity to share with us such a poignant story that helps us understand the real reason and motivation of where you come from. You mentioned the ministers patient and family advisory council. And I was hoping you can tell us a bit about the work of the Council and its mandate.

BLK 05:30

We are a provincial advisory body to the ministry and the Minister of Health with a mandate to improve patient family and caregiver care by ensuring that the voices of patients families and caregivers are at the center of policy development, and decision making. The Council provides expert advice to the minister and the Ministry of Health, on health system priorities and transformation. And as you’re well aware of the amount of transformation that has been going on this last little while is just unbelievable, inspiring and scary. So we’re very, very busy as a council. I’m privileged to work with an incredibly thoughtful group of members, and really, really proud of the work that we’ve been doing. And you know, it’s been interesting, and it’s been very fulfilling, it’s real. It’s not a thing. It’s not a tokenistic, a tokenistic thing. That’s there. It’s actually a very, very genuine with lots of support.

PK  06:35

I’ve heard you speak of the work of the council, and particularly the members, and you’ve always spoken about them in such high esteem and respect. And I hope to have the chance to meet them one day, you identify culture change as a key theme in your Council’s recent annual report. And you’ve been really outspoken about the importance of adopting this culture of CO designing health care systems, not just with health care experts, but also patients, families and caregivers, and those with lived experiences. But what does that system of CO design really look like in practice? How does it work?

BLK 07:16

It’s a definite skill set. And we need to build capacity in the system for it. Culture change means recognition of the value that patient family and caregiver brings to the healthcare system transformation. So looking at patients, families and caregivers, not as their lived experience, journey, but and storytelling, per se, looking at all of the other skill sets that we all have, because we’re all consumers of health care. But we also have full time jobs, or we have volunteers and we have education. And we have so many things that we bring to the table. So it’s basically engaging from the perspective of this is what may have happened in my health care journey. And this is where with my other skill sets, I can help to advise help you reflect help look at policy, help, look at measurement, help look at the social determinants of health that were so important on a person’s health trajectory, they have an amazing amount of expertise to offer. And I think that’s the piece that we really have to nurture in Ontario, we’re so far ahead than anybody else with this because it’s a policy like if you think of the Ontario health teams, they have to have patient family advisory councils, it’s in the policy, there’s very few places that you will go now that you will see a large organization, even some smaller organizations not have that advisory council there, but not just as advisement as working towards partnership working towards co design. So not the tokenistic sitting at your table, yank somebody off the street, throw them out of systems table, but actually we’re you’re taking the time to so in practice, it actually looks like a proper recruitment process. I interview process, learning, mentoring, training, ongoing supports. So that’s what it looks like in practice.

PK 09:20

So if I understand correctly, there could be hundreds of these family and patient advisory councils across the province, associated with many healthcare institutions, both large and small. And if someone listening in wants to get involved on their local patient and family advisory council of their hospital or healthcare institution, how would they go about doing that?

BLK 09:46

I think the easiest way now is through the Ontario health teams because now that there’s 57 of them, they do have the websites and they do have our tising out is that they could look on and Google and look for or you know, patient engagement opportunities. Ontario health has always been a leader, even when they were health quality Ontario has been a phenomenal leader in this field as well to thinking now of health 811 might be a good place to resource some information, that would be the best way to do it. And there’s a lot of outreach happening now through all the Ontario health teams out to their communities, getting the word out that we want to have you come and sit at our tables and actually work with us.

PK  10:30

Last year, the patient and family advisory council was heavily involved in supporting improvements to Ontario’s digital health strategy. Can you tell us about some of your key recommendations.

BLK 10:43

We’ve had so many topics that have come to our council. And this is the one that excited the council the most. And we had a subcommittee and everybody showed up and worked really, really hard on a really tight timeline, because they felt so inspired and passionate about the potential that Ontario could be a leader in doing this. So basically, it came down to trust and access and using technology where it makes sense. So that was one of the pieces. It was also so critical to build the trust with the communities that you’ve collected the data from using data to support for many, many, many of the people on our council, they’ve actually have lived experience of a data privacy breach. So it’s even more raw for them. And for the equity deserving groups among our council and in general, the tangible harms from the use of data is just such a strong pulse point that is going to take time to work through that. There’s definitely a willingness though, to embrace this, that we first need to build trust. And then that starts with transparency. And with engagement. It’s as simple and as complicated as that. And then the second theme is access is that wanting access to our data to help navigate the system to help us work with partners with clinicians and caregivers. So it’s a question of both access transparency are the key issues

PK 12:22

with the proliferation of digital health systems, how can we ensure that the design of these systems takes into consideration the health needs and preferences of patients and families and caregivers, while also respecting their individual privacy and ensuring data protection?

BLK 12:40

to our work with the ministry, we’ve really underscored the importance of data transparency, engaging directly with the communities that are impacted by the data. Building public trust and improving data literacy was one really, really big one, and is key to include Ontarians in digital and health data policy, and program development. So once again, it’s the inclusion having the people there. There’s champions in all types of communities, and there is innovative leadership, there’s a natural leaders out there in these communities. And that’s what we’ve been able to tap into. So the recommendation was if you can tap into these community leaders that have the respect, then we can also help to build the council to build the advisory councils that people need for this. And it’s the importance of true inclusion and equity, which includes recognizing and reconciling the harms that certain communities have faced from the use of data. Historically,

PK13:47

equity deserving groups, such as black and indigenous communities, in particular may have experienced harms and inequities resulting from how data about them has been collected and used in the past. How do we ensure that their privacy and access rights are safeguarded in the CO design of health data systems, and that they trust the process enough to actually participate in it?

BLK 14:12

We are fortunate enough that we’ve spent many years building this council and we do have a lot of diverse voices, black indigenous disabilities abilities. The one of fundamental thing that we’ve heard for the group because we’ve done a lot of work on this is there has to be the acknowledgement of the historical harms done with data, that that is something that if we kind of tried to tiptoe around or ignore, there will absolutely be no buy in whatsoever. So it’s fundamental that we talk about health data or just think about the view of health data that it is, as Ben still can be anti oppressive, and it needs to be trauma informed. So you know, equity deserving groups have because of that historically facing those significant harms need to be part of the process, they need to really genuinely know that they are being engaged for their expertise, that they are actually guiding a process. And a lot of times, that’s bonding and relationship building. Sometimes people try to circumvent and get to an outcome maybe too quickly, and it needs a longer trajectory. So you can actually build trust within the team and build trust with the health data. There is an opportunity to embed engagement as a default when planning and using health data, especially for equity deserving groups. So always making sure that you have patient family caregiver group or lived experience or resident citizen Council, however people identify but that you’re actually going out to that community and genuinely doing the engagement with them.

PK 15:59

So when it comes to mental health, we know that the ravages of stigma can significantly impact patients, families and caregivers. In your experience, Betty-Lou, how can we strike a balance between using health data for beneficial purposes, like planning and improving mental health resources and services, while also avoiding further stigmatization or harm to individuals and communities?

BLK 16:24

It’s complicated. So this is something that we have talked so much about, not just the council, but in my other work sphere, which is director of a health care organization that deals with peer support and lived experience and mental health and supportive housing and all the parameters of where you really see this faster. And it’s a nuanced question. And it needs to be handled with a trauma informed approach, with equity at the center comes down to choice, which makes it difficult because you have to please the whole spectrum. And there are some situations where people may not be comfortable at all, with disclosing their health, data information. It’s integral that the choice is allowed. If we continue to share data, and it doesn’t remain with the individual, then we just perpetuate the harms that were already there. The easy answer, which is really complicated is it’s personal choice. And I know we have a lot of members who were very open to embracing yes, we need to share our data for the good. But can you please hold back my mental health and addiction parts? If I’m identified at all, because of what can happen due to the stigma and discrimination and bias and judgment that still surrounds and embeds mental health and substance use addiction issues?

PK17:52

It’s so important to build trust with the system with your provider, I suppose in in making that choice and feeling confident and trusting that it’s going to be respected? Absolutely. I’d be curious to ask you, especially given your work and your own personal experience. How do you navigate situations in which patients may want to keep their health information private, out of their own personal choice, as we just discussed, but do so even from their own family members? So in situations, for example, where families are not so cohesive, or where the family dynamics are not so healthy? How do you navigate those inter familial dynamics,

BLK 18:37

I’ve seen both ends of the spectrum. So for myself, from the family situation that I came from, it would be a toxic family situation, and I did not want to share any information whatsoever at all. But then when I look at Pete, for my late son, is that we were very, very close. And he always gave permission for me to be part of his care team. But because of the way that people interpret because there’s different interpretations of the privacy standards, I was never quite allowed to be part of his care team, like it was always because he was of age, we can’t tell you this, we can’t tell you that. And my way to try and dance around that was is that he’s given permission. But if you’re still uncomfortable, at least let me share with you what’s happened this weekend, ie, peach relapsed IE, there was a suicide attempt, you know, and so there’s information that you need to have. And if Pete’s coming back home, to his mother to be his caregiver, because that’s where he lives, then I need to be part of the care team. So I see it from both sides. One of the biggest themes that I see very strongly across Ontario that comes across very, very strong is that family members, caregivers, people who are actually doing the caregiving feel shut out, you know, and it particularly comes up when it’s a mental health and or substance use addiction issue. So they’re feeling very shut out of the care and not being able to help their loved one because they’re not allowed in, even though their loved ones are giving permission, once again, is a nuanced situation of we’re really, really trying to protect people, which is the priority. But then when does that protection become almost exclusive of what a family might need to actually take care of their loved one.

PK 20:41

I think those are two great examples, even in your own personal situation and lifetime, how you may in some situations, really not want to share that information yet and others need to share it in order to get that family support that you speak of. As you know, my office has oversight over Ontario’s health, Privacy Law, P HIPAA, and core to that legislation is this concept of individual control over one’s own personal health information. How important do you think it is for patients and families to retain access to their own data and exercise control over it? As we talk about potential reforms to Ontario’s health privacy law, how important and instrumental does that concept remain? In whatever reforms we might see?

BLK 21:39

It’s hugely important. That’s my personal one. But I also hear it through the council. And through all the other areas where I’m networked in and doing things is that there’s a very, very strong theme that it’s our data, we should have access to our data. So the council provide a robust advice to the Ministry of Health regarding digital and health data, excellent advice on the importance of patient family and caregiver access to their own health data. Many of us have noticed that the access to personal information by patients, families and caregivers, as well as providers is a really foundational component of care, quality and patient safety.

PK 22:25

One of my office’s strategic priorities is trust in digital health. And our goal is to promote confidence in the digital health care system by guiding health providers to respect the privacy and access rights of Ontarians. And also to support the use of personal health information for research to the extent that it serves the public good. So in your opinion, what advice would you have for my office to make advances on that goal,

BLK 22:57

I think it probably goes back to that building relationships bonding piece, it’s a process where the only way we’re going to get to the heart of that is when we actually see a lot of councils or a lot of advisories, and really good partnership and engagement and CO design with patients, caregivers, and family. And that’s the crux of it. And it sounds so simple. But it’s not because to do that properly, takes a lot of process and a lot of time and a lot of engagement, particularly when you ripple out to equity deserving communities. And you’re also trying to mitigate historical harms and historical mistrust while you’re trying to build trust. So I think that’s one of the most important pieces is that when we actually are standing up more seasoned, and I’ve built capacity in Ontario, for this type of engagement and CO design. And, you know, we’re building all the tools and everything we need to move forward on this. And there’s a genuine interest intent and heart soul connection, that healthcare system really wants to do this and do this properly. And I think that’s for your office to visiting some of these councils coming for advice to some of these councils. So I think whatever ways and means there is to build a relationship but also sharing information and build literacy around that and understanding of of what it is you do. Your office does, what it is you’re trying to do because like I said the general agreement is data for Good is a good thing.

PK 24:47

I would love to talk to you after this podcast on some of those concrete steps we can take to reach out to the community of patient and family advisory councils. and start that conversation, I totally agree that it would be helpful not only to share information with them, but to hear their perspectives that can help shape our own actions and decisions when it comes to health privacy in Ontario. Yes, great conversation, I always learned so much from you. And I want to say thank you again, for sharing your story with us today. Your work every day is a demonstration of how resilience and bravery can be really, truly inspiring. And I know that you’re breaking down barriers, and debunking stigma, with all the good work you do to build a better and more inclusive health system for all Ontarians. So thank you, on behalf of all of us,

BLK 25:48

well, thank you very much. And I think that that’s what all of us with, you know, living experience of all types of health care, you know, traumas and issues. And that is that we want to be known for our resiliency, for our strength for the wisdom that we can bring to the table and how we can take such tragedy and turn it into being part of the solution. So that’s why I’m always so honored, particularly, you know, to be working with you and to come onto your show, and I thank you for that.

PK 26:20

Well, thank you and for listeners who want to learn more about the great work of patient and family advisory councils, there are links to resources in the show notes to this episode. You can also visit our website at IPC dot o n.ca. To learn more about the work the IPC is doing to support trust in digital health. Or you can always call or email our office for assistance and general information about Ontario’s access and privacy laws. So that’s it for today. Thanks for listening, folks. And until next time!