The multiple myeloma shared decision making on ChoiceApp

Chapters

[00:00] Introduction: Be the Captain of Your Ship
[01:40] Welcome & The Goal of Shared Decision-Making
[02:21] Research Background: Understanding Patient Preferences
[04:42] The Need for a Tool: Introducing Choice App
[06:37] How to Use Choice App: A Step-by-Step Guide
[08:33] The Treatment Preferences Survey & Best-Scaling Method
[11:23] Understanding Your Personalized Summary Report
[13:26] The Quality of Life (MyPOS) Survey & Tracking
[15:55] Community Perspectives: Patient & Nurse Feedback
[20:47] Summary of Benefits & How to Download the App
[23:03] Closing Remarks & Contact Information

Transcript

[00:00]
Our next session ties in really nicely from our last session. If you’re ever in Queensland and you come to one of my groups, I bang on about this all the time. We want you, when you’re living with myeloma, we want you to be the captain of your ship. Now, it’s a very complicated ship that you’re running, and you have to employ some pretty good crew mates, but at the end of the day, it’s your ship, and we need to be guided by you as the captain of which way you want to go.

So, I want to introduce our next speaker who’s joining us today from CAPRI. This is the beautiful Maya Joshy. She is a research manager at CAPRI, which is an independent consultancy focused on high-impact research to improve engagement and understanding of community and health consumer needs. Maya is passionate about using patient preference research to meaningfully integrate patient values into healthcare decision-making at both an individual and systemic level.

This includes centring patient voices in treatment discussions with healthcare teams as well as at a policy level when deciding what treatment options people have access to. Maya’s background is in patient advocacy, patient education, and patient-centred research in the field of rheumatology. She’s now moved into the myeloma space. And you’ll notice on your tables that orange pamphlet, and Maya’s going to be talking on that today. So if you need to reference that later on, thank you so much, Maya.

[01:40]
Thanks, Megan. So I’m Maya and I’m going to be discussing an online tool that was designed to help facilitate shared decision-making conversations between patients and their healthcare team. And I think it’s the perfect time for this, as just before lunch Donna gave an overview about shared decision-making and why it’s important in myeloma.

But as a quick refresher, shared decision-making is where you and your healthcare team work together to make treatment decisions. So that treatment decisions not only incorporate your clinical circumstance, but also your personal circumstance and preferences.

[02:21]
Okay. So I’ll start with a bit of background. As Megan said, I’m a research manager at an organisation called CAPRI. This stands for Community and Patient Preference Research. We specialise in conducting research to understand people’s values and preferences, including those of patients, carers, healthcare providers, and community members. Overall, our work aims to help groups like government, industry, and healthcare systems make decisions based on what people value, or in other words, make decisions that are aligned with the values of the people actually impacted by the decisions they make.

We work across several different treatment areas at CAPRI, but we’ve been lucky enough to work particularly closely with Myeloma Australia across a number of different studies related to myeloma over the years.

So one of these studies we conducted was in 2018, and its goal was to explore the treatment preferences of people living with myeloma and then compare them to the treatment preferences of carers, haematologists, and nurses. Now when I use the term treatment preferences, I’m referring to just what’s most important to an individual when it comes to making decisions about their treatment and how they value different aspects of treatment.

So, for example, how the treatment is delivered—whether the person prefers an oral tablet, an injection, or an IV; whether it’s delivered at home or in a clinic; how much it costs; what side effects an individual might be willing to take on; and what benefits from treatment are most important to that individual.

So, the two main findings from this research project were that not all patients value the same treatment features equally, and that there’s some misalignment between what patients value and what healthcare providers value. So what this showed us was that shared decision-making is especially crucial in myeloma because patients have different treatment preferences and your preferences may be different from your healthcare team.

Therefore, it’s especially important to have open conversations about what’s important to you because it’s possible you and your care team could have different ideas about what the best treatment for you looks like.

[04:42]
But despite the importance of shared decision-making, we found that there’s a lack of resources and tools to actually help facilitate these types of conversations. So with this context in mind, we found that there was a need for a tool that gives people living with myeloma the opportunity to identify what their preferences are and then summarises this information in a way that’s easy to communicate with their healthcare team.

So that’s exactly what we did. Over the past few years, we’ve been working with Myeloma Australia and with support from Janssen and Takeda in order to develop this free shared decision-making tool. We’ve gone through several stages of pilot testing, including interviews with patients and healthcare providers, and we’re excited to now be sharing it with the broader myeloma community. In fact, you may have already seen some Facebook posts on Myeloma Australia’s page introducing the app.

Here’s a quote from one of the patient partners who piloted the app for us in early days and her thoughts on why the shared decision-making process is important. I think it’s quite powerful and underlines the need for a tool like this. So she said: “Some patients may feel inhibited about asking dumb questions of their medic or about asserting their own priorities and may not have even worked out what their priorities are. Shared decision-making allows patients to establish their priorities and gives them a voice in the treatment they receive.”

[06:37]
Okay. So, now that I’ve given a bit of background, I’m going to jump right into what the app actually looks like and how to use it. Then I’ll provide some experiences of people within the myeloma community who’ve used the app and then some tips for getting started on using the app if you would like to do so.

I’d like to let you know also that all the information I’ll cover today is available at choiceapp.com.au.And for those who are here in person, I know this will also be shared with people over the internet, but if you’re here in person, you have these flyers on your table, and there’s more by the door over there, and they summarise some key information. So don’t worry about trying to remember everything.

Great. So, after you’ve downloaded the app, you’ll be asked to sign up and create a profile. You can do this by connecting with your Facebook account, with your Apple ID if you’re an iPhone user, or you can just register manually. No matter what option you choose, we’ve designed it to be accessible, quick, straightforward. Now, you will be asked to enter some information, but I want to assure you that your data is very safe. We adhere to very strict privacy policies at CAPRI. Your data will not be shared with anyone and it is stored in Australia in a secure environment, not overseas.

The most important part of creating a profile is this question here that will ask you to enter a code word. It says optional, but it’s not optional and that needs to be fixed. When you get to this question, please select MMSDM as your code word. This stands for Multiple Myeloma Shared Decision Making, but it’s quite a mouthful to say, so we use MMSDM for short.

[08:33]
So once you’re on the homepage of the app, you’ll see the three main activities that make up the shared decision-making program. This includes a treatment preferences survey, a quality of life survey, and a follow-up survey. I’ll give a brief overview of each, starting with the treatment preferences survey.

So this exercise is considered the main activity of this shared decision-making program. It takes about 10 minutes to complete and it uses a choice-based methodology called ‘best-scaling’ which will probably be unfamiliar to most people, but other patients who’ve used the app have told us that it’s easy to get the hang of. After you’ve completed the survey, you’ll receive a real-time, automatically generated summary report that will highlight what treatment features are most important to you.

This is what the survey itself looks like. You’ll be presented with a series of screens just like this one. Each screen is a different hypothetical treatment profile and you’ll be asked to select which feature you think is the best or most desirable for each profile and which feature you think is the worst or least desirable. So for this person, for example, you can see that they think the best thing about this treatment is that there’s no side effects. The worst thing about this treatment is that it has to be administered by IV at a hospital. Now another person may answer this question completely differently. There’s no right or wrong answers and that’s what makes this sort of exercise so informative.

So, you’ll be asked to answer a number of scenarios like this, but you’ll get through them very fast, especially after the first few screens. Some screens may seem similar, but there are small differences between them. And by observing how your answers change across screens, the app on the back end can then use that information to determine what features are most important to you and by how much.

As I mentioned, this technique is called best-scaling and it’s frequently used in preference research—the type of research that we do at CAPRI—and it’s considered a more reliable way to determine someone’s preferences than, for example, a more standard exercise like rating how important something is to you on a scale from 1 to 10. This is because my eight out of 10, for example, could be very different to somebody else’s eight out of 10. Someone could also rate all features as equally important as nine out of 10, which would be very understandable, especially in the myeloma treatment area because all parts of treatment are important of course. But unfortunately this wouldn’t give you as much insightful, practical information that could help with decision-making.

So best-scaling on the other hand takes advantage of our ability to identify extremes and will be more similar to the types of trade-offs and tough decisions that we have to make in real life when making treatment decisions.

[11:23]
Okay. So when you complete the survey you’ll receive this interactive summary report based on your answers, and it’ll group features by their level of importance to you from higher importance to moderate importance to lower importance. Now, those features grouped in the lower importance category doesn’t mean they’re not important to you. Just means that they’re simply less important relative to other features shown.

Beside each feature, there’s these little arrows, and if you press them, it will expand to show you what your preferences actually are within each feature. So using the example of mode of administration, we can see that for this person oral treatment is preferred, and then subcutaneous injections, and then IV.

So you can use this information. You can take it to your doctor’s office and show it to them directly on the phone if you want, or you also have the ability within the app to email this report to yourself or a family member or anyone you choose. And you can print it off and bring a hard copy if you want as well. And at the end of the presentation, I’ll talk a bit more about how you can incorporate this into your appointments.

So, I do just want to note that this survey is not designed to select a specific treatment for you. Treatment features are hypothetical. They’re examples of things that can be associated with myeloma treatments and are designed to help guide a shared discussion with your healthcare team, but are not designed to select a specific treatment.

Now, embedded in the survey itself, we have this step-by-step video that walks you through the survey process. I won’t play it today as I’ve already talked you through that process a bit, but I just wanted to let you know that the resource is there. It’s embedded within the app. It’s on the first few pages of the survey. So, you’ll have a chance to view it before completing the exercise if you’d like.

[13:26]
The next survey is the quality of life survey. This one is very quick and simple. It’s a multiple choice survey adapted from the myeloma patient outcome scale, which is also referred to as MyPOS. The MyPOS questionnaire is commonly used in clinical trials and sometimes just in routine visits and doctor’s offices to assess quality of life issues specific to myeloma. So you may already be familiar with it. As you’re completing the questionnaire, you may realize you’ve answered very similar questions like this in the past. After you’ve completed the survey, you’ll receive a personalized report summarising your quality of life for different areas of wellness.

This is just a screenshot of what one of the survey pages looks like. This is an example of the personalised report. So, as you can see, it gives you a score for different areas of wellness and then one overall score out of 100. Just like the treatment preferences survey, you can print or email this information if you choose.

But what is especially useful is that old reports are stored within the app. So, you can come back and complete this questionnaire as many times as you’d like throughout your treatment pathway, which will allow you and your healthcare team—if you choose to share the information—to track changes in quality of life over time. And you’ll notice that when completing the survey, a number of questions ask you about your wellness in the last week specifically. So understandably your quality of life and your wellness could be different some weeks compared to other weeks. And this can allow you to track that.

[15:55]
Lastly is the follow-up survey. So once you’ve completed the other activities on the app and had a consultation with your healthcare team, we would really appreciate it if you could come back and complete the short follow-up survey. We just want to know about your experiences using the app—for example, how accessible it was, whether you shared this information with your healthcare provider, and if so, what was that experience like? The goal is just for us to evaluate the program, as it’s still in its early stages, so that we can keep improving it for other people living with myeloma.

I thought it may be helpful as a part of this presentation to hear from people within the myeloma community about their perspectives on Choice App and shared decision-making in general. This first video is of Kath Rutherford who is someone who is involved in piloting the app. She’s in her early 70s and was diagnosed with myeloma a few years ago.

[16:25] Kath’s Video Transcript:
“It allows the medic to have an insight into the patient’s experience, the patient’s priorities and the patient’s perspectives. Often the medic’s perspective is necessarily one of how this treatment works with a population, how it’s distributed, how generally, you know, what percentage might respond in various ways. Whereas an individual is more concerned obviously about the treatment’s effect on them, and it’s very important for the medic to see that both in terms of psychology, emotion, and as well as the general medical response to treatment.

I quite enjoyed using the Choice App because it was a very clear app, very easy to use, very appealing to use. I think being able to answer questions and then find a summary at the end that is a visual representation of what is important to you… you might think you know what’s important to you, but until you answer all those questions, you don’t actually see them presented objectively or numerically. And I found it interesting just to see how important survival was to me after answering all of those questions. Survival was clearly the most important factor for me, rather than side effects.

All of these sorts of sources of information and analysis are really important when you’ve got a serious diagnosis, a serious condition. And I think it’s important because it does show you what’s important to you, how you’ve assessed different factors, different aspects of your condition.”

[18:10]
So this next video is of Haley Beer who’s a specialist myeloma nurse. Some of you may know her. She is based in Melbourne and she has been working closely with CAPRI since the beginning to help develop this app. She’s the manager of programs and services at Myeloma Australia.

[18:27] Haley’s Video Transcript:
“Grace introduced the concept of Choice App when CAPRI posed the idea to us at Myeloma Australia and we thought such a wonderful idea and concept and something that can really, really help the people in the myeloma community. I think it’s a wonderful tool for healthcare professionals to use in the clinics. Most of the time there’s a limited time frame that we have when we’re seeing patients and their family members in the clinics, usually only around 15 minutes, and it’s often a lot of information to get out in that time. So having Choice App forms being filled in prior to the appointment not only helps the person and the family member organise their thoughts and their priorities for the meeting. It helps the doctor also then understand what the priorities are and where they should focus their time.

I think, from the pilot, one of the most important takeaways we found from patients utilising the Choice App was that it really highlighted that shared decision-making is so important and really needs to be placed in the forefront of our minds when we’re caring for people living with myeloma. And it also reaffirmed that it’s really important that we empower our community with information and tools and opportunities to learn more about the disease, because sometimes you just don’t know what you don’t know and what is important to ask. And I think having the Choice App available to utilise before seeing the doctor will really help maximise the benefit of having a treating team caring for you.”

[20:08]
So you can check out more stakeholder videos if you want of other people within the myeloma community and their perspectives.

[20:17]
So to quickly summarise, Choice App can help you identify and reflect on your personal treatment priorities, centralise and prioritise your questions to prepare in advance of appointments, and then communicate this information to your healthcare team using the personalised summary report, and lastly, track changes in both your preferences and quality of life over time throughout your treatment pathway by accessing old reports on the homepage menu.

Anyone living with multiple myeloma can use Choice App, but our pilot phases showed that it’s particularly beneficial for people who are recently diagnosed, undergoing a change in treatment, or looking to build confidence in clinical interactions with their healthcare team.

In addition to potential benefits for you and your family, it also has the potential to benefit the community as a whole. So we’ll be analysing patients’ treatment preferences altogether using de-identified data, of course. So none of your personal information will be connected to the data set. But by being able to look at preferences across the community, we can improve understanding about what is important to people living with myeloma on a community level and then use this information to advocate for access to treatments that better align with patient values.

Additionally, we can see how things like location, age, or employment status may impact preferences to identify different areas of need within the myeloma community. And that’s the reason why we ask you to provide some information such as your age, location, and employment status so that it can be used in this way.

[21:57]
If you’re interested in checking out the program, we really encourage you to do so. It can be downloaded on both iPhone or Android devices. But because it’s a fairly new app, it doesn’t always show up right away in the App Store when you type in its name. So, we do encourage you to use this direct link. And if you’re here in person, the QR code will take you to that same download page.

It’s just a little example of how to use the QR code. I think a lot of us got quite familiar with QR codes in the midst of the pandemic, needing to check into places. But in case you need a refresher, just open up the camera app on your phone.

Now, if you have any questions or you need any assistance, please don’t hesitate to contact me. My contact information is at the bottom of the flyer. And I’ll get back to you as soon as possible if you reach out to me. And I’ll also be hanging around once the workshop closes today. So, I’m more than happy to answer any questions or even help you download the app, set up a profile if that’s something that would be useful for you.

[23:03]
Well, thank you so much for listening today. Such an honor to get to connect with the myeloma community in person. It’s been so great to work with the myeloma community in the development of this app. As I said earlier, at CAPRI, we work across a number of different treatment areas, but we often say in our office that the myeloma community is truly special, that patients and carers are so passionate and engaged and so generously willing to participate in research.

So, it’s a true pleasure to get to see you and connect with you today. And I do hope that this tool will be useful and ideally help improve some of your clinical experiences.