Involving patients in the development of digital health solutions

The real experts for their diseases are the patients themselves. With their experience, they are an essential part, for example, in the development of Digital Health Applications (DiGA), which provide everyday support in coping with the disease and its consequences. From the exploratory approach in the first stage of development to concrete user feedback after the launch of an application, they are involved in different ways in every step of the development.

BEFORE THE PRODUCT DEVELOPMENT

Affected people provide insights into their lives and highlight the most important problems

 01  We start the joint journey of discovery

The first step in the development of a digital medical product is to immerse ourselves in the lives of patients.
We take part in the everyday lives of those affected and thus learn more about their needs and problems. Because only if we know these can we develop solutions that are a perfect fit.

This is how patients are involved: 

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    We accompany those affected in their everyday lives and familiarize ourselves with their environment, daily routines, and habits. Our approach is purely observational; we do not assess, intervene, but learn from it (shadowing).
    • x Accompaniment in daily life to analyze fall risks among Parkinson's patients
    • x Assistance in the daily routines at a cancer aftercare station
    • x Observing the use of an insulin pen throughout the day
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    In conversations, we learn more about the needs and issues of the patients. In doing so, we prepare questions beforehand or allow those affected to freely discuss their lives and daily routines with their condition (open and semi-structured interviews). This way, we gain insights into the course of their illnesses, treatment paths, and existing coping strategies, enabling us to identify obstacles and problems within these domains.
    • x Structured interviews focusing on stress experiences and coping strategies
    • x Open interviews
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    We gain further insights from the experiences of those affected by researching public posts. These posts reveal what occupies and concerns them in their daily lives: Which topics hold special significance to them? How do they navigate daily life with their condition, and how do they communicate their experiences with others?
    • x Forums for those affected, Facebook groups
    • x Posts on social media platforms: Instagram, TikTok, Facebook
    • x Beiträge auf Social Media: Posts auf Instagram, TikTok, Facebook
    • x Autobiographies, personal blogs of those affected
    • x (Specialized) presentations by those affected, podcasts
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    Even at this stage, it proves highly beneficial to invite interested patients to be part of an 'Expert Advisory' team for long-term collaboration, available regularly for open exchanges. These patients are consistently engaged throughout all stages of development, gradually building a comprehensive understanding of the product (Sponsor-User/Friendly-User). This approach prevents the original ideas and desires of those affected from becoming distorted or misunderstood during the course of product development ('Chinese Whispers' effect).
    • x Affected individuals participate in regular 'shoulder checks' on ongoing developments, where the team, in the context of meetings, presents the progress of idea elaboration and its implementation within the product to the affected individuals.
    • x Affected individuals participate in subsequent collaborative workshops to exchange new ideas or solutions.
    • x In advanced phases, affected individuals test prototypes of new features within the product and provide feedback, such as testing a symptom tracker over multiple days.
    • x Affected individuals critique, correct, and optimize parts of the product. They communicate to the team which changes should be made to the product, such as corrections to phrasings and statements in knowledge units.

 02  We find our focus, our destination

In this stage, we sort, screen and analyze the initial insights gained from the previous stage. For further research, we now have tangible indications and questions, which we review and concretize together with the people concerned. In this way, we find out which main problem our planned product is supposed to solve.

How patients are involved:

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    Through (online) surveys, we can obtain a representative assessment and feedback on our questions from a larger sample of those affected. While the previous stage focused on gaining insights through a few individual pathways, in this phase, we involve a large group of those affected. This allows us to gauge how representative specific issues are and how different groups of affected individuals perceive certain questions.
    • x We present various problem areas that we've learned about in the previous stage. Individuals affected then rank these areas, enabling us to identify which problems are particularly common (e.g., "Please rank these stress factors based on their strength").
    • x Through a representative, large group of those affected, we assess the frequency of specific stressors or resources (e.g., "How often do these stressors occur for you?").
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    Based on the insights gained, we can now conduct conversations more precisely. For instance, we narrow down our questions and interview guides to particularly relevant topics or provide specific answer options for certain questions (semi-structured and structured interviews). In contrast to online surveys with a large number of participants, although this smaller sample doesn't provide representative statements, we gain more personal and detailed insights. Since we're discussing very specific subjects, the selection of individuals for the interviews is also more focused.
    • x We delve into specific, previously identified, problem areas rather than the overall condition (e.g., "What personal strategies have you developed to cope with fatigue/exhaustion related to your condition?").
    • x Building on the important solutions identified in the previous stage, we can ask more detailed follow-up questions (e.g., "What are your experiences with mindfulness-based stress management?").

BEFORE the product development we have obtained the following results:

  • We have understood key problems and needs of those affected.
  • We know more about the structures in which patients move within the framework of their disease and what their life with the disease looks like.
  • We know which of the key problem areas our product solution should focus on.

 

DURING THE PRODUCT DEVELOPMENT

Those affected help to design and test

 

 03  We consider the best route to the destination

From the previous steps, we have gained insights into central problems and needs. Now, together with those affected, we develop initial ideas for solutions using different approaches. From these initial ideas, we select the best approach and concretize it – again, of course, with the support of those affected.

This is how patients are involved:

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    Those affected are actively involved in generating solution ideas. They can jointly develop and discuss ideas with our team, question and evaluate initial solution approaches (Co-Creation).
    • x After the team independently generates ideas in the first part of the workshop, those affected are invited to the plenary session, where they choose their favorite idea and share what particularly appeals to them about it. Subsequently, they collaboratively discuss the pros and cons of different solutions with the team (e.g., stress management course with educational content on "Understanding Stress" vs. stress management course with meditation sessions).
    • x Those affected outline a desired product for a specific problem and present it to the team (e.g., a product supporting individuals in professional stress situations).
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    We can present concrete solution concepts in detail through an online survey to a large, representative group of those affected and have them evaluate these concepts. This feedback assists the team in selecting the solution to be implemented in the product.
    • x Those affected rank solution proposals using a prioritized list
    • x Presenting "finished" products that don't exist yet (e.g., on a product website, in an app store entry, on an advertisement poster). Those affected indicate which of these products particularly resonate with them or which ones they would download/buy.

 04  We set off and test the first routes.

Now we are getting started! We begin with the implementation and development of our product. Stakeholders can continuously follow the development and be informed about the progress. They also test individual components or preliminary versions of the entire product before it is launched on the market.
How patients are involved: 

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    Those affected experiment with initial prototypes, testing functionalities while undergoing typical scenarios and use cases within the product. Evaluation includes: usability, intuitive operation, potential obstacles, and misunderstandings in usage. For instance, we provide specific "tasks" for those affected to complete in the prototype. During this, we observe the path they take in the application, whether it aligns with our expectations, and whether it leads to a successful task outcome (Usability Testing). Subsequently, we can also ask specific questions about usage.
    • x Those affected are requested to create a diary entry. The team observes the steps they take within the product to complete this task.
    • x Those affected go through the registration process and initial steps in the product (onboarding). During this, they "think aloud" and continuously share with the team what's on their mind, any uncertainties, or questions that arise (Thinking Aloud Test).
    • x Those affected undergo a test that provides feedback on their cognitive performance. Subsequently, we conduct a brief interview with them regarding their perception of the test's usage and the understandability of the feedback.
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    A smaller group of those affected gains access to the product before it's made available to all those impacted. Through online surveys or interviews, they regularly share their experiences with the product and provide suggestions for improvements. The team can incorporate these suggestions during the product development or consider them for future iterations of the product. In open-ended format interviews, those affected share their experiences with the product.

    • x Those affected receive access to an online course and conduct short structured interviews with a team member after each completed learning unit.
    • x After a week of using an app for a chronic condition, those affected share their experiences through an online questionnaire.
    • x Users report technical issues and questions directly to the team via email while trying out the product.
    • x Those affected use the product in their daily lives for an extended period and maintain a regular "diary" to record their experiences (Diary Study).
    • x After using the product, those affected provide feedback using a questionnaire that measures usability (e.g., System Usability Scale, SUS).
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    After those affected have tested the preliminary product in their everyday lives for an extended period, they exchange insights with each other. This process reveals diverse perspectives on usage, obstacles in operation, as well as suggestions for changes and desires for the product's future development. This informs the team about adjustments required before the product's release.

    • x Those affected engage in on-site discussions about the product, while the team observes the conversation from the outside without intervening or explaining (Fishbowl).
    • x Using a prepared set of questions, a team member collects feedback from those affected through a group discussion (Focus Group).
    • x Through a video conversation, various individuals affected discuss their experiences with the product, highlighting its pros and cons. A team member moderates the conversation and provides prompts if necessary.

During the product development we achieve the following results:

  • we have developed solution approaches and translated them into initial product ideas.
  • We have had these product ideas reviewed and evaluated by stakeholders.
  • We have finished the first version of our application, which we can publish in the next step.

AFTER THE PRODUCT DEVELOPMENT

People affected help shaping the future and further development of the product

 

 05  We have reached our destination – and we are already looking for the next one

It is accomplished, our product is on the market now and is available to those affected. We already have our focus firmly on the further development of the product.
Those affected give us regular feedback on the use of the product and show us what benefits they derive from it. They set the course for the further development of the product, its functions and scope.

How patients are involved: 

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    Those affected share insights from their daily lives using the application and provide us with feedback about the impact our product has on their daily life with their condition and their overall well-being. In this process, they can also offer feedback about areas of the product that are not functioning optimally or suggest additional features they'd like to see in the future. This ongoing exchange ensures that our entire team (including product development, marketing, business development, etc.) remains connected with those affected, fostering a deep understanding and empathy towards our target audience.
    • x Regular (e.g., quarterly) online surveys provide insights into satisfaction with our product, improvement suggestions, and new product ideas.
    • x During workshops, we engage with those affected to discuss their past experiences with the product and gather suggestions for its future development.
    • x Through interviews, those affected engage openly with colleagues from different teams, sharing both positive and negative experiences with the product.
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    Ongoing research into public reviews online provides us insights into how our product is rated and perceived. This allows us to understand both the challenges and difficulties that arise, enabling us to address them promptly. Additionally, we also receive recognition and praise for our product in these sources, allowing us to identify the features and attributes that are particularly valued by those affected.
    • x App reviews and ratings in the Google Play Store or Apple App Store
    • x Public YouTube or TikTok videos from those affected, where the product is reviewed
    • x Public posts on Facebook or Instagram, sharing experiences with the product
    • x Articles from those affected on personal blogs, introducing or testing the product
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    Through various channels, we provide those affected with an ongoing and accessible way to directly address their feedback and wishes concerning our product.
    • x We have set up a dedicated email address, allowing those affected to reach out to us at any time with their product-related wishes and suggestions.
    • x We offer a support hotline for telephone inquiries on our website.
    • x Within the product itself, we incorporate feedback options for product evaluations and change requests.

AFTER product development, we continuously achieve these results:

  • We check our product for its usefulness as well as ease of use.
  • We identify further needs of the people affected and collect ideas for possible extensions of our product – and start the cycle of product development from the beginning.