Table 4.

Six main themes and recommendations.

Themes	Summary	Main recommendations
Customizable and engaging	Because the disease manifests itself very differently in each individual, the more ‘customizable’ tool is, the more useful it will be. One of the things about Parkinson's is that it's very individualistic, so you have to sort of address different situations for different people, and so the more customizable it is the better is, but with a broad framework to help people do it. [Patient] But it might be nice to have those customizable so that you can put your own priorities, and your own areas, and organize them in such ways that you can. [Patient] Increase engagement by focusing on action and practical advice to support self-care at home. My care plan is goals, but it's actions too. It's more active, it's my actions. Action in terms of taking medication, action in terms of speech therapy, it's action to be. [Patient]	Ability to set personalized care priorities and to consider the variability of the disease progression. Propose a holistic assessment of wellness across dimensions of physical, mental and social, and spiritual health. Focus on “actions to do” to engage the user and support self-care at home.
Use of visualization as an intervention	Visualization is intended to provide PwP with an awareness of the historical evolution of their disease and to help them to manage their condition at home. I think that the graphing for me was important for me actually, the lines, because when he first got diagnosed, I tracked everything from his diet, to his vitamins, to his intake of water; absolutely everything to figure out how to manage any symptoms. [Patient] Add contextual information to improve utility of visualization. The graph is very important for caregivers. Low and Hight, I would like to add notes, because I need to add more details. I’d like to see a pattern or not. [Informal Caregiver] Will I be able to will there be an option to put comments on each, I think you should be able to see, if you’re not sleeping a week at a time, click on the comments to see what's causing that, the sleep problem, not just that you’re not sleeping for a month or something like that. [Patient] On the graph, the ability to red flag certain things would be good. You know when we’re talking to the doctors and it's, this month was particularly bad, well why was it bad? So if you’re able to red flag certain days as being worst, and then it would be, like, I know it's weird, but I find he feels worst in certain months. [Informal Caregiver] Confusion due to the lack of clarity. I find it too confusing if you get two lines on the same. Preferably I would find it, it's easier to read [Health Care Provider] Possibility to share data with physician before medical appointment and using data recorded for improving communication with HCP during follow-up. Which one doing the reporting? Sharing the platform could be useful. [Informal Caregiver]. Yes, I don’t have memory. So I don’t remember, so if her could report for me. It's good. [Patient]	Ability to follow care priorities over time (e.g. trends). Ability to allow annotations within the visualizations to contextualize changes. Possibility to interact with the platform by adding red flag. Ability to customize the data and choose optimal time frames for representation. Ability to share the data with health care providers.
Provide tailored care tips and personalized care resources	Personalized health messages or notifications to keep motivated (e.g. physical activity, social activity) or to have practical tips or advice (e.g. educational messages). My physical activity sucks, so having this tell me that I need to do more physical activity would motivate me. Cause you know, sometimes I’ll be depressed and not motivated, but having something do that - that's nice. [Patient] based on patterns, it is recommended that you take the following action. [Patient]	Tailored care tips should be related to the report generated after self-assessment of care priorities (self-tracking tool). Increase the personalization by making tailored recommendations focusing on action to do. Resources that are age or disease stage specific are the most valuable. Design a tool for helping PwPs to adjust their self-care over time and received tailored practical care tips.
Informative and interactive	Providing interactive educational resources about disease progression, symptoms, side effects of medication, treatments available, social impact of PD. One of the resources that you need to be sure you have looked at when you’re looking at the symptoms is that little book about understanding non motor behavior. Non motor symptoms. [Patient] Support navigation to local resources (e.g. support groups, social worker, medical equipment, physiotherapist, etc.). When we’re looking for support groups, it needs to be more defined. Because most support groups are for older people, and he needs to connect with other people with Parkinson's his age, because they won’t have the same issues he does. [Informal Caregiver]	Simplify user-interface by creating 2 main resource categories: Educational resources and community resources. Make resources customizable to individual interests.
Straightforward and responsive tool	A platform easy to use and as simple as possible I’ll start by saying like the platform should be kept as simple as possible. So the less information you show, just show the right information. So the less you show the better it is. So the first screen is too much data, and it's not organized well enough to be able to understand the, what you’re trying to convey as a message, (inaudible) in terms of information. [Patient] Provide more instructions to guide the user. It's complicated to use it and not clear how to navigate from one page to the next. [Patient] Layout too busy with too much information It's very busy, and I don’t know if there's an order here that's a random order, because the care priorities, these would all be part of care priorities I would think. [Patient]	Reduce information overload on the user-interface and summarize some information (e.g. care priorities selection). Add “search engine” or “interactive instructions” to guide the user and define some health terms used. Use large icons and letters. Propose short training or an interactive user manual with the tool.
Collaborative tool	Patient and informal caregivers collaboratively achieve their self-care in everyday life. Informal Caregiver: Which one doing the reporting? Sharing the platform could be useful. Patient: Yes, I don’t have memory. So I don’t remember, so if her could report for me. It's good.	Design to sustain a collaborative approach of self-care.

Note. Based on the themes, we provided recommendations suggested by the participants during the participatory design workshops that should be considered when designing the next prototype of eCARE-PD.