Episode 4 – Patient partners
Including the voices of patients and families: A collaborative approach to patient safety
Transcript: Full episode 21:06
MICHELLE PRESTON – Partnering with patients and families is key to ensuring safe and high quality health care. A new Canadian Guide called Engaging Patients in Patient Safety was recently published by the Canadian Patient Safety Institute (CPSI), and in that guide it states: Patients, families and providers need support to work together and increase their mutual understanding about how to contribute to patient safety.
Here to explore the topic of patient engagement are three patient partners. Each brings a unique perspective as either a patient or a caregiver. And one of my guests will talk about her experience as a patient engagement researcher.
MICHELLE PRESTON – Joining me on the phone from 100 Mile House is Sandra Zelinsky. Sandra has been living with a chronic disease for about 25 years. She was diagnosed with Crohn’s at 19. She’s also a breast cancer survivor and she is a patient engagement researcher and she’s going to talk to us a little bit about her research later on. She’s been recognized by CPSI as a Patient Safety Champion, and Sandra believes that partnering with patients and treating them as equal partners will ensure the right patient receives the right care at the right time. Welcome Sandra. [00:59]
SANDRA ZELINSKY – Thank you.
MICHELLE PRESTON – And joining me from her home in Abbotsford is Michel White. Michel has a long history with the health care system since she was about 8 years old. She’s had three brain tumours removed throughout her life. She’s also had a full knee replacement, she’s recently been diagnosed with Hepatitis C and an acquired brain injury. She also has the experience of being a caregiver. Her daughter was recently diagnosed with a lung disease and will need a lung transplant at some point in the future. Michel believes that health is 95% attitude, 5% medical, and that healthcare will only be safer when patients are respected, listened to and treated as part of the medical team. Welcome Michel. [01:33]
MICHEL WHITE – Thank you.
MICHELLE PRESTON – And on the phone from Fanny Bay is Beth Campbell Duke. Beth has been a caregiver for her husband for about the last 10 years. Her husband had a full lung transplant a year ago. It took several years for his diagnosis to be correct, however. He was misdiagnosed with asthma and arthritis and it took five years for the doctor to refer her husband for a lung transplant. Beth and her husband Tony believe that caregivers and patients need a community around them to heal. And together they’ve created a website to support patients and families going through transplants. Welcome Beth. [02:15]
BETH CAMPBELL DUKE – Thanks Michelle.
MICHELLE PRESTON – So I’d like to kick things off by having our audience get to know you a little bit more. So could each of you talk about your personal experience living with a chronic illness or caring for someone who is very sick and how that has impacted your life and your experience with the health care system? Sandra, maybe we could start with you. You’ve lived with Crohn’s since you were 19 years old. Can you talk about how that’s impacted your life and your experience with the health care system? [03:01]
SANDRA ZELINSKY – I thinks it’s had a dramatic change on my life. I can’t really imagine what my life would be without having a chronic disease because it’s hard to remember a time now that I haven’t been living with chronic illness. [03:25]
It’s definitely had its challenges. It’s been very up and down. I’ve had lots of positive experiences as well as negative experiences through the health care system as well as with my own health of living with chronic illness. As you get older, I think, you know, you can kind of relate to other people and have those conversations. But at 19-years-old, not a lot of your peers are having those types of conversations about a serious chronic illness.
You learn that you have to kind of read other people around you, including health care professionals. I think there’s an assumption that health care professionals will be understanding but they’re really more, you know, in tune with the clinical pathways as opposed to living with the day-to-day challenges of the chronic disease.
And it is emotional all the way through. Not just, you know, being a 19-year-old. Each time you go through a new experience with your health it’s always a new challenge to re-adjust to whatever that new normal is. So it’s not like a linear process where you’re sort of climbing a ladder and getting better and then ultimately you have it all figured out. It’s a lot messier than that.
MICHELLE PRESTON – Yeah, and I’m sure Michel if we turn to you I’m sure a lot of what Sandra is saying is resonating with you as you’ve had three brain tumours removed, you’ve been in health care since you were 8-years-old, in and out of hospitals. How did that shape how your life went would you say? [04:50]
MICHEL WHITE – I think that it has helped me become a stronger person. It has helped define what I can and can’t do but it’s not limited what I can and can’t do. So having had the brain tumours removed and having a brain injury, it’s not, my medical condition is not who I am but I had to learn that. I had to learn that I am a person, I am a voice. And it’s taken me a while to realize that I had a voice in the medical system. Because it was always about the doctor telling me, the patient, what had to be done. And it didn’t always mean that it was the correct thing. [05:06]
When your condition has so many variables to it, my condition is different than a lot of other people’s. So you can’t put me into a box – I am not my condition. And I’ve had to work with the health care system to say that my health is important to me. And we need to work together as a team. It’s not them and me, it’s us all working together.
MICHELLE PRESTON – Absolutely, we need to work together with the team, the clinical team and with patients. And so I think this is a good segue into your experience, Beth. You’ve been a caregiver for your husband for all of these years. You experienced your husband’s illness right alongside him so what’s that been like for you? [06:18]
BETH CAMPBELL DUKE – Well, my husband has had a chronic illness. I grew up in a family where a close family member had a chronic illness as well. So, while I don’t have firsthand experience of this, I’ve seen within my family group of you know, just the ups and downs and the importance of finding good doctors and moving along if you can’t start building that team. [06:38]
And I think it’s more difficult to do when you are the one patient on your own with just one doctor or a couple of specialists. Because when we landed in transplant, you land right in the middle of a team. So you land in the middle of a medical team with nurses, physicians, transplant surgeons, a dietitian, counsellors, there’s all kinds of people, physiotherapists.
And because we live in Fanny Bay there aren’t a lot of lung transplant people in our neighbourhood. When you land in the transplant team in Vancouver you also land in a support group. So there are transplant patients and their families there that you can talk to. I think that’s, for us that was like a big sigh of relief. Once we got the referral and we got into transplant and we walked into the clinic and Tony is lugging his oxygen and they took one look at him and said would you like an oxygen concentrator, and we looked at each other and said I think these people understand us. This is going to be good.
So yeah, that whole experience of having a team, really it, I mean, I can’t say enough about just from a psychological standpoint of ok, breathe, we’re now here where people have our backs, you know.
MICHELLE PRESTON – And so as you’ve said, the patient and the caregiver should be part of that team. So maybe we can talk a little bit about some of the research, Sandra, that you’ve been involved in because that is the whole point of your patient engagement research, is to bring the voice of patients and caregivers to the clinical team so they’re more involved in health care decisions and care planning. So can you talk to us a little bit about the research you’re doing as a patient engagement researcher? [08:17]
SANDRA ZELINSKY – Yeah, so maybe I’ll start off with the “SPOR” initiative, so that’s the Strategy for Patient Orientated Research, it’s a national initiative. So one of the main things I do is one I bring the patient perspective. So if I’m working on let’s say a scoping review I have the patient perspective and that lens that I bring to it. [08:43]
So that’s one area, but then the other area is engaging with other patients to bring a collective voice to research. And that’s one of my favourite things to do because I think it’s more impactful and powerful when you have more than one voice to inform health care as opposed to just my ideas or my opinions to inform a process or a research project.
MICHELLE PRESTON – And the Surgical Safety Checklist, that is a safeguard that many hospitals across the country have introduced or made mandatory in some cases. So can you talk a bit about how patients have been involved in that work? [09:32]
SANDRA ZELINSKY – The Safe Surgery Checklist is mandated across Canada. And so we looked at the patient experience of the Safe Surgery Checklist. We gathered the experience through doing focus groups as well as narrative interviews. And basically in a nutshell what came from that was that, number one, there is a section with the Safe Surgery Checklist where the patient is awake and it was being done to them. Only one patient was aware of the Safe Surgery Checklist and nobody else realized that there was a Safe Surgery Checklist in place because it was being done to them and not with them. [09:46]
And so what happened was we found that in fact the portion where they were awake was causing patient anxiety because it’s a very repetitive process. And all of the health care professionals that come into contact with the patient during that period are asking the same questions over and over. So, What’s your name? What kind of surgery are you having today? And so patients were saying things like, I’m kind of getting a little bit worried that somebody hasn’t read my file because why is everyone asking me what kind of surgery I’m having today? So some of these things were coming up.
So we worked through the process so once we gathered that information then we would actually explain what the Safe Surgery Checklist was to the patient. And then they had a chance to reflect back on their experience and say, ok, now I can see where that was happening, but I didn’t know that that’s what it was.
And so we worked through that data, we analyzed it, worked through it with patients, and came up with six patient recommendations, which was basically to create some educational materials to inform the public about the safe surgery checklist so that when they go in it’ll help to alleviate anxieties, but also as a safety measure.
So one of the things with the Safe Surgery Checklist is that they want to achieve 100% compliance amongst the OR team. And so in order to do that they hired auditors for the operating room. So I think, you know, it would be interesting to do a research project two years later to see, ok now patients have this information about this Safe Surgery Checklist so if a doctor approaches a patient, and they see value in the Safe Surgery Checklist because it’s for their safety, that now if the doctor is not asking them the questions they can say, oh, wait a minute, how come you’re not asking me these questions about, you know, name, surgery I’m supposed to have. And they’re that sort of another layer to helping provide their own safety in this surgery process.
So that’s a little bit further down the line. That portion hasn’t been done. The recommendations were all put in place. All six patient recommendations were put into place. But it would be interesting to see as it rolls out and people become aware of the Safe Surgery Checklist, if they’re able to be a part of that team, to encourage the compliance of the Safe Surgery Checklist.
MICHELLE PRESTON – Excellent. That’s a really good example I think of a collective voice of patients working with the health care system to improve safety and quality. And really it comes down to communication, doesn’t it? And so, Michel, if I turn to you, do you see benefit in what Sandra is talking about with bringing a collective voice to the health care system in order to improve processes and quality and safety? [12:49]
MICHEL WHITE – Having the patient involved in whatever level, whether it’s at, you know, with the GP or before you go into surgery, it’s so important. I had the doctor years ago when I was first diagnosed with my first tumour on my pituitary gland, and he said to me, I’m the doctor, you’re the patient and I’ll tell you when there’s something wrong with you. And that’s when I decided that no, you’re the doctor and I’m the patient, but I’ll tell you when there’s something wrong with me. Because this is everybody working together, whether it’s me as a patient or me as a caregiver for my daughter, with medication, it’s so important because I get side effects to medication that aren’t even on the list, that aren’t even on the rare side effects. And my daughter has the same experience, she gets all these side effects that aren’t even listed for trials or whatever they’ve done. [13:14]
So, you know, they don’t understand that there are people who still react to these medications. Like the new medication that I started for Hep C. I just talked to Health Canada, and I said, there’s a side effect I’m getting that is not listed anywhere and you guys need to know this so that you can help somebody else and so that they know that this is a side effect.
MICHELLE PRESTON – Beth, I want to bring you in here. Both Michel and Sandra have talked about having a collective voice, being an advocate for yourself or for your loved ones. So how is your experience? Do you feel that you have been able to do that for your husband? [14:39]
BETH CAMPBELL DUKE – Yeah. I think so. I have a background in science and in education, so when it comes to being dropped into the middle of that learning curve I think I was ahead of people. And so there’s a lot of systemic issues from my standpoint that happen. That’s one of the things when I created the patient binder that we have on our Transplant Rouges website. That was created in no small part because we watched how other families and caregivers were able to cope with information that was provided. [14:51]
So we’ve included the medication list, how to do that. We have a sheet that helps you make sense of visits to the doctor. So keeping good notes when you go to the doctor, and you’re more likely to be included in that circle of care because they realize, wait a minute, here’s somebody who knows and is a reliable source of information.
MICHEL WHITE – And they know that you’re not just walking in there pretending to be a know-it-all, and you know, I know everything, I know what you’re talking about. All you’re doing is providing them with the information that they’re going to need, and it helps them. And that’s what I talked about at the beginning about us working together as a team. Because I’m trying to help them to make it better for me, or my daughter, or you know, whoever we’re going for. And that’s how it all comes together as a team. It’s not me against you, it’s me helping you and you helping me. [15:50]
MICHELLE PRESTON – Sandra, did you have some thoughts you wanted to share from your perspective? [16:30]
SANDRA ZELINSKY – I think about this too And how if the patient takes some responsibility and has responsibility, like they have a certain responsibility to their own health, that things tend to run a little smoother. And in fact, the health care professionals appreciate, you know, when you come in organized and, you know, have the information to have those conversations with them. [16:34]
BETH CAMPBELL DUKE – Yeah, and just to add to that too. When you show up and you’re organized and you have the patient binder and here’s the list of meds, etc., that buys you credibility with the health care professionals as well. [16:56]
SANDRA ZELINSKY – The team aspect, you know, it’s very important. It’s probably, I feel, like one of the most important things. When I’ve moved, it’s one of the hardest things to change is my specialist and my care team. At the same time it takes time to build the relationships and the rapport and I think that’s important for patients and family members to understand too, that on your first appointment it’s not going to be always smooth sailing. Like, it takes time for, just as in any relationship, it takes time to get to know one another and it’s the same as in a doctor/patient relationship, and the rest of the care team for sure. [17:08]
BETH CAMPBELL DUKE – Yeah, absolutely. I’d just like to second that. And too, to remember when you are moving and you find a new person, and it does take time, is that in the current system doctors don’t have time. So yeah, you can’t expect for things to start running smoothly in the first one, two, three kinds of, I mean they may, but at the same time doctors are hamstrung by not being able to spend a significant amount of time with patients. [17:46]
MICHELLE PRESTON – I’d like to thank all of my guests today, Sandra Zelinsky, Michel White and Beth Campbell Duke. And we’ll wrap up this episode of Patient Safety Voices by having each of our guests tell you about the next steps in their journey. We’ll start with Michel. [18:17]
MICHEL WHITE – I am trying to get through each day. I am nine weeks and two days away from finishing my medication for Hepatitis C and then I’m hoping that will be gone along with all of the side effects I have. And then I can, you know, get back to focusing on the brain injury that I have and life and dealing with, you know, everyday things. Life is a journey and if I can help one person by having a voice or giving a voice, then to me I guess the journey is worthwhile. [18:30]
BETH CAMPBELL DUKE – Well right now my husband is one year out from his lung transplant and he’s doing fairly well. There are always, always, blips in the road, we’re still coping with that. The first year is where a lot of the upheavals are. We’re in the process of selling our house in Fanny Bay and moving. We’ll be moving to Victoria. It’s just not sustainable to be here where we are, we’re not close to follow-up. He has a lot of follow-up things that have been triggered due to his transplant, which are good, but require more specialists to places like doctor’s appointments, and get more involved with community. So that’s what we’re working on. Trying to get ourselves sorted and land in a place where we can re-establish a community and get back to work. [19:03]
SANDRA ZELINSKY – I am working on my patient-oriented research activities. I will be teaching a workshop and I have a presentation for our imagine team, which is one of the large chronic disease network studies and this one in particular is for inflammatory bowel disease and IBS. That’s right in the near future. And I have other, you know, I have a presentation at the end of June that I will be attending in Edmonton for the SPOR summer institute conference. And then, I guess whatever health challenges come my way, I just deal with that as it goes. [19:51]
MICHELLE PRESTON – All of my guests are patient partners with the Patient Voices Network, a community of patients, families and care givers working together with health care partners to improve BC’s health care system. [20:34]
For a full transcript of today’s episode, including links to the CPSI guideline called Engaging Patients in Patient Safety and Beth and Tony’s Transplant Rogues website, you can visit our blog at www.bcpslscentral.ca.
Thanks for listening.