DHIC 30 – Why Health Data Needs to be Human

This transcript is AI-generated and human-corrected, and may contain minor errors.

Rachel Gillespie: We talk a lot about patient outcomes as a potential measure but to be honest, it’s the journey.

Katie Bryski: Welcome to Digital Health in Canada, the Digital Health Canada podcast. I’m Katie Bryski.

Shelagh Maloney: And I’m Shelagh Maloney.

Katie Bryski: And we are still at the eHealth Conference and Trade Show, enjoying the connection, the collaboration, and the conversation.

Shelagh Maloney:  And the buzz.

Katie Bryski: And the buzz, which you can hopefully hear a little bit.

And we’re thrilled to continue our series of podcasts here at the conference. Health data is more than standards and electronic medical records. It’s a person’s story. But how do we make health data solutions more human, both in what they capture and how they’re shaped? Today, we are thrilled to welcome two guests to guide us through their own stories, strategies, and advice for the future of health.

And a very warm welcome to Rachel Gillespie, a senior consultant and strategic advisor at Mariner Innovations, as well as being the official eHealth Conference MC.

Shelagh Maloney: And doing a stand-up job.

Rachel Gillespie: You guys are too kind.

Katie Bryski: And Sundas Shamshad, a senior program and policy advisor at the government of Alberta, and a patient partner.

Sundas Shamshad: Thank you for having me.

Shelagh Maloney: Well, as you may know, we start the podcast with asking our guests about their career journeys. So we’ll ask each of you, so how did you get from where you started to where you are today? You go ahead, Sundas.

Sundas Shamshad: Yeah, for sure. Like, my story started when I was diagnosed with HER2 cancer, um, ductal carcinoma, in my late 20s.

And being diagnosed with cancer at a young age brings unique challenges, but my experience was further shaped by my intersectionality as a woman of color, an immigrant, a member of religious minority, and living in rural Alberta. For every treatment, I had to travel five hours to Edmonton, and my cancer journey spanned 17 months.

That included three surgeries, fertility preservation, and chemotherapy. All my surgeries, specialized testing, and follow-ups were completed in Edmonton, while my chemo was administered locally. But facing cancer at a young age in rural community brought an immense emotional, physical, and financial strain, and most of the cost of travel, accommodation, meals, time, travel from work, uh, turned this difficult battle into a logistic nightmare.

These experiences inspired me to turn my pain into purpose and ensure that no one fights alone. So in 2019, I founded Sisters in Cancer, a group in Fort McMurray that provides emotional, financial, and mental ser- resources to patients and cancer survivors through self care workshop, awareness campaigns.

We had a partnership with a global organization, and we created a space of compassion and belonging for people fighting cancer. I also sit on multiple boards. I also am a patient partner for research conferences, community partnership against cancer, ensuring perspective of patients are involved and inform national research and policy, and I advise AHS, which is Alberta Health Services, on multiple fronts.

I also am a guest speaker in multiple conferences, so I have that experiences too. So it’s quite a plethora of experiences all around. Right.

Shelagh Maloney: We had an episode this morning when we recorded about disconnected care with Health Canada and, and the government of Nunavut, and they talked about some of those things.

You’ve, you’ve personalized those things. Like, we’re repeating, traveling far, not understanding, not having the care that you need. So appreciate that.

Katie Bryski: Rachel, your journey.

Rachel Gillespie: I so appreciate, Sundas, so your, your just even the passion that you have around telling the story and, and capturing the story, ’cause in my personal experience, that has been a driver for me.

So although it’s slightly different in that I work at the intersection of digital health as a consultant and supporting organizations as they go through large system transformations. But what changed for me significantly and how I see myself now as a bit of a patient advocate was in May 2023, my husband was diagnosed with terminal esophageal cancer stage IV.

So from his diagnosis to his death, it was 13 months, and this past Saturday, it was two years since his death. So I have now outlived my husband, who died at the age of 48. So telling his story, for me, has been a really important part of my own grief journey, but it also significantly changed the way that I support organizations as they navigate their own digital health journey.

And just the way that I want to tell the story and the questions that I’m asking of the organizations that I’ve worked with has changed significantly. What’s interesting is that cancer, for someone who lives with cancer or dies with cancer, it permeates your life and your family’s. And my personal story now, since my husband passed away, is I’m now four weeks away from a double mastectomy as a preventative cancer treatment for my own health issues.

They were things that I knew about prior to my husband’s death. I delayed them because of the experience that we had, and now I have no more time that I can delay anymore. So my patient experience or journey was through my husband’s lens and now through my own, and still while navigating how to support organizations in this digital transformation because to me, it cannot wait any longer.

So yeah, it’s a, a curvy road that we’re on. You never know where it’s gonna take you.

Shelagh Maloney: Thank you both for sharing your stories, ’cause and, and you’re right. It is so impactful and, and Rachel, w- we met, you were speaking at one of our conferences in Hal- it was in Halifax actually, right? It was so impactful and, and when you have a patient partner at the table, it changes the conversation, I think what you said.

I’m curious ’cause one of the questions in the plenary session today was, are the patients, are your clients, are they consumers? And our Australian colleague told us that they don’t refer to, to them as patients, they refer to them as clients in Australia. So I’m curious about your perspective around the use of language.

Is it I, I’m a people, I’m a person first, I’m a patient. How does that resonate with you? What are your thoughts?

Rachel Gillespie: Here’s the thing. It’s so individual. My personal opinion is I don’t care what you call me, but understand my story So whether you think of me as just a patient or a user or a client or consumer, just know my story.

To me, that’s more important than how you put me into a categorized box. So that’s how I see it, but I don’t know about for you.

Sundas Shamshad: I would agree with that. Yeah. I don’t care what label you put on me, but see me as human being, because a disease strips you down. You are at your worst at the time when you meet these doctors.

You’re asking for humanity. To be treated by compassion. I’m not just a number, I’m a person, I have a life. I have to go back to that life, and I have to make sure that even going through this treatment, I have the best fighting chance, but also quality of life after. There’s not a lot of resources out there for survivorship, and people are living through, uh, after cancer more and more.

Their survival rate has been increased, but also living with long-term side effects. So listen to me, have compassion, make sure that I feel heard. And at times, I, I also think that I am compensated, because if I am giving my time from my work, I’m taking time off work and helping you out, if I’m not compensated for, for

It doesn’t have to be monetary, but just seeing that work being compensated in some social aid form is very detrimental. If you’re listening to my opinion, I need to know that it has made a difference, and I can see it in the product.

Katie Bryski: There’s meaning behind it.

Sundas Shamshad: Yes.

Katie Bryski: Just picking up on a point you mentioned about, like, a lot of that burden in a disconnected care system falls on the patient.

We often talk about, like, oh, they have to tell their story. But often what we really mean when we say that is they have to tell what tests they’ve done. They have to tell who they’ve already seen, what diagnoses they may have already received.

And that’s part of the story, but it’s not really the full person.

That doesn’t get at where they’re coming from- Mm … what’s important to them, what their ultimate goal for their care is, right? Like, what they want to get back to, who’s around them. So I’m curious from both of your perspectives the things that are important about you that maybe don’t make it into the electronic health record.

Rachel Gillespie: Well, I often talk about it in my experience in being a caregiver for someone who was dying of cancer, is that we became the integration layer. Yeah. So we became the integration layer from hospital to hospital, or care provider to care provider. And yes, it was telling your story over and over again, but it was also trying to help them link what it meant.

But in terms of, like, what the health data, th- there was parts of the experience that just weren’t thought about, and then we talk about, like, what’s your story? Because like you say, like, prior to being a patient, you know, you might be a, a sister or a wife or a mother or a father or whatever the person might be.

And I remember when my husband was going through his journey, I remember when we got the diagnosis, and the first thing that came to both of our minds was, how will we tell our daughter? And I remember asking the physician that, and I understood that that was not in his scope of what he was there to do, but it was…

That was what mattered to us in that moment, and there wasn’t really any support to that. And I think that was health data that was so important. It was going to dictate how we were going to navigate the care journey from diagnosis to treatment to recovery or later death. That part, there’s components of the health data that don’t consider the whole person, and I think that that’s what’s so important.

Like finances too. Prior to navigating a journey with someone who was going through cancer, I honestly always assumed we were in a public healthcare system, that so much of this was paid for, and the incidental costs, the missed work, the parking, the driving- The prescription … the mileage, the everything, it was significant.

Like, the burden was significant. For me, that, there’s components of the health data, what it was included or what wasn’t, that was part of the whole, what makes up the whole patient. Yeah.

Sundas Shamshad: I would like to add the emotional impact of the diagnosis and the fear of, or, and sort of financial stress and burden of navigating through treatment, but also fatigue or chemo brain or things like that. Yes … or cognitive changes, and changes in relationship and employment. I would also emphasize on social and cultural experiences, because we have to look at the nuances. Like, for example, I had an encounter where I had a surgery and this nurse, after the surgery, she was putting the blanket on my head, and she kept putting it on, and I was coming out of anesthesia, so I was putting it off.

And I was like, “What are you doing?” Like… And she’s like, “I saw you wearing a hijab when you came in, and now you don’t have the hijab, so I’m putting it on your head-” “… so that you have a hijab.” I was like, “Oh, I feel seen.”

Katie Bryski: Yeah.

Sundas Shamshad: And it is such a small gesture of wrapping me with a blanket, and I was fighting her, getting it off, because I was like, “What is going on?”

She understood that this is part of you, and it’s important. But she understood, and she thought that it was important to me, so she’s like, “I’m helping you.”

Katie Bryski: As you’re coming out of anesthesia.

Sundas Shamshad: As I’m coming out. But as a person of color and experiencing inclusivity and cultural safety and feeling understood with healthcare is very significant.

There are things that culturally would significantly make choices in their treatment plan because they belong to certain groups. Sure. And to understand that and meet the patient where they’re at is very important, and I think those are the things that data should also include.

Rachel Gillespie: Even in the cancer experience too like the, the chemo fog- and things like that. It’s a real thing … as a caregiver, I had to be there because sometimes how my husband might process the information and how I was processing the information, like I remember those long car ride homes. It was like, “What did you hear? What did I hear?”

Yeah. It was completely different. And it was equally different because his perspective and my perspective were not the same, because I was looking at it as a caregiver, and he was looking at the potential of his end of life. So it was- Oh, no … a very different experience.

Sundas Shamshad: But I also think that, like, what cancer has taught me is not the just the end absence of disease, but the ability to live well.

Rachel Gillespie: Yes.

Sundas Shamshad: Be healed, supported, and maintain your dignity and find meaning through treatment and beyond. I think the conversation should be the healthcare should recognize a person as a whole, and that those are, quality of life is something that we should be conquering, and- Absolutely … th- that should be a, an outcome.

Katie Bryski: Yeah.

Sundas Shamshad: Uh, a patient outcome.

Katie Bryski: Yeah. Health is not just the absence of disease.

Shelagh Maloney: One of the things that our very first opening plenary at the conference was about AI and human and how they come together, and don’t forget the human in the loop. And so I’m curious, your experience, you talked about doing research on your own.

Have you seen or had any experiences where AI or digital has helped or hindered your care journey?

Sundas Shamshad: There is fear about AI, for sure, but patients are use it for good. But I also think that AI should not hinder the personal connection between the clinician and the patients, and the human touch is so much needed because you don’t need a machine to, like, tell you, but you need that person to have compassion and show compassion.

So all the back-end stuff can be done by AI, like diagnose, recording, and everything else. But AI should help the patient, not remove the human in the process.

Shelagh Maloney: Well, and they say the AI scribe is a perfect example. So now the physician’s not looking at his or her computer, but they’re looking at you because it’s not being voiced.

So, you know, Rachel, any experience with technology or AI? Two years ago probably wasn’t-

Rachel Gillespie: Yeah, that’s right. Like, it was- … quite crazy. We were absolutely using it. Yeah. And to be honest, it was a game changer for us. And, and the example I’ll give is my husband had esophageal cancer, and so he had a lot of trouble swallowing, and eating food was very difficult.

And if you think about the way that I described the whole person and that the family unit was very important to us, mealtimes were very important to us. So we would always sit down as a family to eat dinners and what have you. So as his cancer progressed and eating became more difficult, that then started to break down that family unit that we had.

We had a registered dietician who was helping him in understanding what his fiber intake needed to be, his protein, and sort of the swallowing function. But what the registered dietician didn’t understand was our family dynamic, as well as what foods I had in the fridge. So I used AI so much at that time, and I remember as a caregiver, you’re doing everything you can to just try to contribute to a healing environment or supportive.

Like, you’re doing everything you can. So I actively used AI during those times, and I was able to integrate into AI the kinds of requirements that my husband had for his diet based on the registered dietician’s recommendations. But I was also able to say what foods we had in the fridge and what type of meal I was looking to create for our family, so that my husband wasn’t eating different foods than what my daughter was eating, and my husband felt included in the meal experience.

That’s what cancer took away from us, was those simple things like eating as a family. So AI for us in those moments were game changers, for sure. There were other, though, experiences where AI, or at least digitally driven tools, were less helpful to us in the healthcare journey. In our experience, the healthcare system was fantastic, and our healthcare that was provided was excellent, but they also promoted the use of different tools or apps or things like that.

And because we were digitally literate and we were both very committed to the care experience, we actively used them, and yet they were never used on the back end of the healthcare system. So my husband was diligent about tracking his symptoms and entering the information in the app, and then we would go and we would meet with our care team, and it was like it never existed.

And so then that’s what makes it hard, is like we’re trying to utilize the tools for the betterment of his care, and yet didn’t really seem to make much of a difference in the end of things. But yes, AI was absolutely part of the care strategy we had within the home. And to think that people who are going through any kind of treatment or healthcare, they are 100% using AI, just in different forms.

So it’ll be interesting to see where things go in the future.

Katie Bryski: So, like, generative AI, like ChatGPT, it’s very good at mimicking that validation, right? And that kind of empathy. Right. Like, “Wow, Katie, that was a great question.” Like, you know? And it doesn’t get tired, and it doesn’t have bad days, and yet it doesn’t, to me, feel like it has that same kind of human empathy quality.

Like you, as you mentioned, Sundas, like that compassion, like seeing you as a person. So I’m curious from your perspective, what can a human give that AI can’t?

Rachel Gillespie: It was interesting over the course of the conference, there was this, like, repetitive theme around trust I do think that I still trust my healthcare provider more than I trust the AI per se.

Like, the AI can be an, a helpful tool and a support mechanism and lots of other things, but trust I still am looking for from my healthcare provider. I’m still looking for my healthcare provider to create linkages that wouldn’t otherwise be known, things like that. So I- that’s my perspective. I don’t know about for you.

Sundas Shamshad: I totally agree with the trust aspect, and also AI hallucination exists too, so I wouldn’t trust ChatGPT. Yeah. You trust a person who has gone through medical training for so many years. Yeah. Then there is so many times when ChatGPT is wrong about something. Like, you need to make sure that it’s saying it correctly, or you need to go over whatever it has given you.

So there is a trust aspect, and there’s also fear aspect. Yeah. Like, how much information should I share? So-

Shelagh Maloney: It’s interesting, ’cause I’m wondering, you know, we all know that. Intuitively we know that, but man, if I get information, I wanna, I wanna know right away, so I’ll put it into… I, like, I think we’ve almost sold our souls already.

I’m happy to hear you say that you still think twice about putting some of that stuff in. So do you ever put symptoms into a, a chat or an AI or-

Sundas Shamshad: I would do it- … just like a- … but if it’s, like, designated by the government or provided by a health professional, ’cause I, I wouldn’t trust ChatGPT for that.

But yes, if there is a system out there that’s secure, then I would love to engage with it and have some sort of conversation, make sure, like, I understand what’s happening. But I would be cautious about what I share online, and I would be cautious about what I share with ChatGPT, because not all information out there could be ac- used for good.

And, and I think it connects with the work I have done, because I’ve worked in social services, and I’ve seen vulnerable population. And, and we have seen that more and more people who are facing inequity and are vulnerable population are accessing AI, sharing their personal data, and we’re like, “Well, uh, do you understand the whole picture?”

Katie Bryski: I wanna come back to a point that came up earlier, was having patient partners at the table changes the conversation. Can we dive a little bit more into that, Rachel? Like, in what ways? Like, what do you think comes to the surface that might not otherwise?

Rachel Gillespie: Well, it’s so funny, because people, in my consulting role, whether I think of myself as a patient partner or not as a patient partner, but in consulting and supporting organizations through digital health, often they’ll say, “How do we get a patient partner?”

I just think, oh my gosh, look around You need to check that box … they’re everywhere. They’re everywhere. What do you mean? I mean, I think you need to use a lot of creative strategies so that you can appeal to individuals for, and be very purposeful about what it is that you’re looking for, and what the patient partner should expect from the experience too.

So if you’re looking to, for real, do a co-creation exercise with a patient partner, that has the potential to be a really meaningful experience. But if you’re asking for a patient partner to check a box, and usually we can see it coming… Yeah, I get my back up around, like, their advisory committees can be great, some of them are really fantastic, but like I do get cautious about that, and the surveys also.

I think all of these methods can be really fantastic, but honestly, some of the best experience I’ve ever seen is almost like informal patient partner experience. It’s like walking the journey with the patient partner I remember this because, again, it was partly ’cause it’s my experience all the time with helping organizations, but where the primary hospital where my husband was treated, they had an oncology parking location, which was really great because we always ensured that we had a parking space.

However, it was sort of in this awkward location, and at different points in time, he had very limited mobility. So it was in this awkward location, and then there was never a mobility device or a wheelchair there available. It was not easy, so I always wanted… I was like, if I could just get an administrator to just come and meet us in the parking lot and come watch me push my husband.

At that time, he had a neck brace. We could not bump. If we bumped, he could break his neck and die. Like, come and watch me. You know, and he didn’t wanna be in a wheelchair. He didn’t want his wife pushing. I just wanted so desperately for someone to walk with me. And I remember at the end of his care, like, we were so grateful, but, like, you know, one of his physicians called me after he died and said how much he enjoyed having my husband as a patient.

And I was like, “Yeah, he was a pretty good, pretty good guy after all.” But I remember saying to him, “I would like to be more involved in the future implementation of whatever it is that you’re doing.” “Oh, yeah, yeah. Great.” Nobody took my name. No one passed it along. So I think patient partners are looking to be invited, and you have to ask, but ask with a meaningful way that they’re gonna actually contribute.

Sundas Shamshad: My experience, like, patients are not simply the end user of healthcare system, but they are the expert of living with illness. Yeah. And that is such a big avenue that we can extract information from ’cause they have a plethora of knowledge on how to navigate through that illness, and I think that’s under-resourced.

Treat them as human beings and not a box, for sure.

Rachel Gillespie: One of the things, like, as I work with digital organizations and the, the patient experience and the caregiver experience has changed significantly is, like, the kinds of questions that I’m asking organizations now. One of the biggest ones that I have is, what are you measuring?

Maybe you’re developing something or you’re creating some amazing application or whatever it is. How are you measuring your outcomes? ‘Cause one of the biggest things that I saw was that different implementations might have looked to increase optimization or efficiency or whatever. But from our experience, it, all it did is what I call, like, lift and shift.

So it might have lifted one area and improved efficiency in one ar- area, but what it did is it just shifted the burden to someone else. And so what I wanted to know is, like, where are you measuring that in your KPIs? What does that truly look like? We talk a lot about patient outcomes as a potential measure, but to be honest, it’s like the journey from the beginning, the middle and whatever that looks like. And I very rarely see that in organizations’ performance measures.

Sundas Shamshad: I would like to add, like, it shouldn’t be the, what the data is you want to collect. It should be what data matters to the patient and how it improves their life.

Rachel Gillespie: Yeah, I just feel like there’s a lot of data that’s collected, and it’s typically for the benefit of the organization.

You know, look at, oh my gosh, that’s so amazing. Well, now that we have all this data, look at all the amazing things we can do. I always wonder, how did it improve the actual patient experience? Like from the individual’s perspective. I don’t know. I just have, like, big feelings about it. On one hand, I want the long-term data implications to be working for the system.

But the short-term data outputs also need to be supporting the patient who is in care in that moment. It’s a conundrum of trying to figure out how do we do it.

Sundas Shamshad: It creates, like, a… Why would a patient partner work with you if they don’t see any value of their work? So if you’re putting outcomes, like, centered into the patient care and patient quality of life, then you’re providing a product that you think that gonna make a difference.

And patient partners want to make a difference, not just about their own journey, but they also want others who are coming after them-

Rachel Gillespie: Oh, if anything, they want it more …

Sundas Shamshad: More, yeah. That’s my driving force.

Shelagh Maloney: People wanna help because- Yeah … they don’t want some… They, it’s an altruistic, I don’t want somebody to go through this, or I can, I know what you’re going through, and I can help you navigate some things, or- Mm-hmm

I understand where the pain point is gonna be. You make a difference.

Sundas Shamshad: Yeah, that’s right.

Shelagh Maloney: And so if you put yourself out there and you find that you’re not being heard or- Mm-hmm … or it’s not being helpful, then- Yeah … it’s very de-incentivizing.

Sundas Shamshad: It’s a burden on them, too. Like, you’re, they’re living their journey or their experience again and again and again because they’re helping you in some sort of form.

Like, if I’m going through, and I’m talking about my cancer, I’m remembering all the things that are- It’s a lot. And I’m good at it now that I have resources and stuff, but it’s a burden on a person to, like, go over all that journey and, and pluck experiences from it to provide you with nuggets so you can help.

Shelagh Maloney: And how do patients react to your… So you’ve formed a foundation or a- Mm-hmm … or a group, and so you said you’ve done all this research and you’re passing it along.

What has that response been?

Sundas Shamshad: There’s times when women are… Like, for example, when I’ve talked to the patients and give them resources, they’re always happy to receive it, for sure.

There’s not a lot of times they stay. So when they’re done their cancer journey, some of them don’t wanna talk to you about cancer. They just wanna put it aside, and some of them are engaged in helping people. Also, there’s different plethora of people who wants to do good in the future, but some of them are like, “I want…”

Even, even my husband, he doesn’t wanna talk about the time when I was going through cancer. But then also that leaves a, a space for me not to be able to, you know, process my grief of going through cancer. Mm-hmm. And I’ve lost a lot. Like, I have, I have, uh, side effects that are long-term. Um, I had mastectomy, so, like, I’ve been living with that.

So all those scars and all that- side effects that I have accumulated at, in the body. I, how do you discuss it? Then you go to these support groups or you go to people who have gone through cancer and you talk about your feelings and this is what we’re going… And I was telling them you develop a really hell of a dark sense of humor.

Yeah. Hilarious. For example, I was anaphylactically allergic to one of my chemo medications, so they would pump me with Benadryl. But for the first time when I got it, and I, I was like, I got the, the shock, and then my oncologist called me and he’s like, “Do you know you’re allergic to mice?” And I’m like- … “No, I have not ate mice. Never planned to eat mice.”

So he’s like, “Well, that medication is made in the cells of mice, so that’s what you’re allergic to, and now we are going to pump you with Benadryl and give you that medication.”

Katie Bryski: Now you know, if you ever wanted a mouse as a pet, maybe don’t do that.

Sundas Shamshad: I would not touch mice.

Rachel Gillespie: Yeah. It’s such a good question though, Shelagh, because in the information age, I think there’s a desperation that comes when you receive a terminal diagnosis, whether it’s a family member, someone close to you or, or whatever it is. You are searching for answers, and so you spend endless hours searching for answers.

If it’s cancer too, you’re searching for survivors. You’re searching for their story. You want a component of hope But in our, my experience anyways, the most valuable sources of information were individuals with lived experience. So being able to talk to willing patient partners, ’cause you’re right, not everybody wants to talk about it.

But if they’re willing, the richness that comes from that is you almost take their word more than-

Sundas Shamshad: Because they have lived it. I mean, there’s times when certain remedies have worked for people and you’re like, “Oh, you’re experiencing mouth sores. Do this remedy, and this will help you.” Yeah. So s- there’s nuggets of information- Or even, like, what to expect.

Rachel Gillespie: Yeah. You know, your, the, your physician might n- not tell you this, but this might be helpful..

Sundas Shamshad: After surgeries, yes, like what to expect, how to recover fast. For example, eyebrows, like, “My eyebrows are gray. What should I do?” So there are remedies to get your eyebrows gray.

Small things like that. Like, they help.

Shelagh Maloney: Well, and those are things that carry the matter. Yes, they matter. They matter to you. Yeah. Like you said, it’s not maybe your physician’s number one concern.

Katie Bryski: I would imagine even just hearing this is normal and you’re not alone.

Sundas Shamshad: Validation for sure … yeah. Like, you know, am I losing my mind? Is it… And, and then cancer is very lonely disease. Yeah. Like when I was going through it, I was going to cancer hospitals and I saw old people.

I was like-

Rachel Gillespie: Oh, yeah …

Sundas Shamshad: all of these people are old and I am young, and is this a curse? Like I… Am I the only one going through this? You look around and you think, “This doesn’t represent me.” It doesn’t represent me. This is not my d- And, and my parents would accompany me, and I was like, I was thinking…

We used to think that people probably think they have cancer and I’m just accompanying them, but I’m the one who’s dealing with the disease, and there was n- nobody like me. So it was such a lonely disease, and I was living in rural Alberta with no resources, no… Like bigger cities have Wellspring and other nonprofits that help you with connecting with people.

There was nothing in Fort McMurray. Right. And it was such a lonely experience. And you’re like, “Oh my God, is this…” There’s no validation. And but talking to others who have had cancer, saying, “Hey, this is happening to me. Is this normal?” And they’re like, “Yeah, this is normal.” Like having those resources, like what is safe, what is not safe, I did this- Yeah

is so important. And connecting with patients, that’s the information you get.

Rachel Gillespie: That… I know. That is the information that they have- Mm-hmm … that you just wouldn’t acquire elsewhere. Yeah. It’s funny, it always goes back to trust too. Yes.

Sundas Shamshad: Yeah.

Rachel Gillespie: Who do you trust? That’s interesting. Yeah. Who do you trust for the information you’re getting and how you’re collaborating?

Katie Bryski: Mm-hmm. I am so deeply aware that Rachel has to go for a mic check.

Rachel Gillespie: I do.

Katie Bryski: Our last question, if you were to look three to five years into the future, what would your hope be?

Rachel Gillespie: It’s such a good question. I don’t think that I want to, like, predispose what it should or shouldn’t be. In some respects, I think in having this lived experience, to be honest, the digital health pieces I think are gonna figure themselves out.

It’s the systems and the interoperability and, but really more of the basic things that I really wanna see change. I wanna see change the, the wheelchairs closer to the parking garage. I wanna see that I can easily, you know, book my appointment online and not have to worry about whether it went through or not.

I, I wanna see the technology advance in ways that I never expected that it could. But I don’t want to dream about something that may or may not happen. I don’t know, that maybe doesn’t sound very optimistic, but I do believe that the people who are in this and who are doing this work for all the right reasons, they’re going to do it because they’re passionate and they’re committed, and I just look forward to being part of the ride, truly.

Sundas Shamshad: Well said. So one of my concrete hope is seamless, safe, and an meaningful sharing of data across the system with patients themselves, but also across the country. I feel like in t- three to five years, maybe we will be able to accomplish that goal and have seamless data sharing. Patients should not have to repeatedly tell their stories again and again and go through that trauma.

Uh, and most importantly, I think patients should have a clear knowledge of what the data is being collected, how is it being used, who has access to it, what benefits come out of it for them, and have transparency. And I think digital healthcare should close, not widen in- inequality. So I hope, like, all of these things.

I think success means not just efficiency or cost saving, but better quality of life, better patient experience, and better support for people living through these illnesses.

Katie Bryski: Thank you so much. Thank you. And, and thank you both for sharing your stories. Oh, thank you for taking the time to be with us and, and for trusting us to have this conversation.

Shelagh Maloney: Thank you for what you do.

Sundas Shamshad: Thank you. Yeah, we really appreciate it.

Katie Bryski: What a great way to end our series of conversations that we had.

Shelagh Maloney: Fitting, fitting to end with the patient experience, and they really almost brought things full circle a little bit for me. You know, when we talked this morning with Elizabeth and François about disconnected care, you know, and Sundas’s story was such a great articulation of those kinds of things.

We say the words, but then we hear that experience, and it, it makes a difference. It changes.

Katie Bryski: Yeah, and taking a step back to that level of how, A, I mean, patients are critical to be involved. We, I hope, all agree on that, but it’s that, how do we do so in a meaningful way that is true co-creation? Again, we say co-creation a lot, but it is what does it look like, and it’s that walking alongside the patient.

Like, again, Rachel’s story really- Yeah … affected me, and…

Shelagh Maloney: And you know, I loved her answer about your hopes in three to five years for digital health, and this came through a little bit at the conference, right? And it’s like it’s not about the schmancy technology and having a seven days length of stay turned into a one-day length of stay or a day surgery.

That’s important. That’s wonderful. But see me as a patient. Have the wheelchair arrive. Call me by name. Respect my culture. Those are the things that are not technology, and I think that, you know, again, full circle coming to our first plenary is the human side of healthcare never will be less important than it is today, and it’s, it’s the most important thing we need to keep in mind.

Katie Bryski: It also makes me think about the conversations we’ve had about defining the problem, right? Like, what is the solution? And it, it sounds like to me the actual solution is a healthcare system that is more human, that has more space for compassion, that is better able to see the whole person. It’s that underlying principle of a system that is healthy enough itself to be compassionate and to be human.

Shelagh Maloney: And you know, I was thinking about this ’cause we’ve heard a lot from clinicians who have a lot of tools. Yeah. And they can go to open evidence or they, you know, there are tools for physicians by physicians.

Katie Bryski: They’ve got an AI scribe. They can look you in the eye while they talk to you.

Shelagh Maloney: Yeah. And they, and they’ve got tools that will help them consult with their peers. But, you know, what Rachel and Sundas talked about was one of the most important things for them was going to somebody who had lived experience, and they- Their peers … had to reach out. Right. Yeah. There’s no formal, a, as far as I know, is there an app for that?

And they just sort of go out to their networks, and Sundass like, “I didn’t have it, so I just created it.” Yeah. And it’s, it’s an interesting, you know, it works for clinicians, and it works for, for patient partners, and I, I, I’m sure everyone’s thought that before- … but it was just sort of an a-ha moment for me.

Katie Bryski: And I think the buzz at the conference is now buzzing at a level that we may have to call it. But do check out the Digital Health Canada website for conference highlights and recap, and of course, you can continue to check out the podcast, uh, this and every month right here on Digital Health in Canada, the Digital Health Canada Podcast.

Thank you for listening to today’s episode. Be sure to subscribe to the podcast to get new episodes as soon as they’re available, and tell a friend if you like the show. We’ll see you next month. Stay connected, get inspired, and be empowered.