Healthcare is a complex system involving numerous stakeholders, which makes it challenging to determine which questions are most important to be explored and addressed and for whom. Three years ago, I found myself at this crossroads. I was eager to explore the intersection of design research and healthcare but was overwhelmed by the mere number of questions to consider.

To gain clarity, I began looking online to see if people living with chronic conditions were discussing their needs and experiences. I was surprised to discover that many individuals were using social media to share their challenges, needs, and even solutions. This revelation piqued my interest: why aren't healthcare systems and researchers leveraging this data to improve healthcare experiences and related products?

As I delved deeper into social media communities, I realized how fragmented the healthcare system is. Naturally, the exploration focused on the US. I was particularly struck by the online communities of nurses who were sharing their own work-related challenges and creating innovative solutions to address them. This made me question why we aren't learning from each other and focusing on the questions that truly matter to those most impacted by the system.

This exploration highlighted the potential of using peer-to-peer healthcare data to inform and enhance the healthcare system, ensuring that the most relevant questions are addressed and that solutions are developed collaboratively.

Looking back in history, even before social media existed or gained its current popularity, people have always found ways to come together to discuss their needs and challenges, particularly in the healthcare system. The importance of health and its impact on people's lives drove these conversations, leading to shared learning and mutual support. Starting in the 1980s, these grassroots movements significantly contributed to pre-Internet, peer-led initiatives in American society, bringing invisible needs and concerns to light and effecting sustainable, long-lasting changes.

One of the most impactful gatherings of voices was the women's health movement in the late 1970s. This movement played a crucial role in improving access to birth control and expanding options for childbirth. It also empowered women to learn more about their bodies and health, leading to increased focus on women's health as a distinct field of study, rather than merely an extension of studies on male biology. (Rodwin, 1994)

One of the most significant movements demonstrating the impact of patients speaking up and demanding change is the HIV/AIDS activism led by ACT UP (AIDS Coalition to Unleash Power). This movement was pivotal because its motto, "Change is possible," drove substantial systemic changes. ACT UP effectively pressured pharmaceutical companies and federal governments to develop and test therapies for HIV. The advancements made in HIV treatment and care stem from this powerful movement.

ACT UP's approach has been extensively studied and serves as a model for other public health movements. Their success in advocating for change illustrates the potential for patients and the public to influence policy and address other healthcare challenges through persistent and organized activism.( Manganiello & Anderson, 2011)

There have been numerous influential movements before the advent of the Internet and social media, which are beyond the scope of this research. However, the Internet has created a new space for communities to form, raise questions, and seek answers. Today, many of us turn to "Dr. Google" for information that is hard to reach.

While social media and the Internet provide us with greater access to information and data, they have also accelerated the pace of impactful movements. Two notable examples include:

The #WeAreNotWaiting movement emerged from the Diabetes community's frustration with slow traditional research and expensive healthcare. Launched in 2013 by Dana Lewis and Scott Leibrand, this movement advocates for quicker access to treatments and technologies. They developed the Do-It-Yourself Pancreas System using open-source software to automate insulin delivery based on continuous glucose monitor readings. The movement has since grown, with many people sharing innovative Diabetes management strategies and technologies online, significantly impacting the healthcare industry with numerous solutions.(Jansky & Langstrup, 2022)

The "Nothing About Us Without Us" movement, rooted in disability rights, emphasizes the necessity of involving affected individuals in decision-making processes. For the autism community, this means including individuals on the spectrum in discussions about autism. When decisions are made without their input, the outcomes are often detrimental, complicating their lives. Involving them ensures that policies are supportive, effective, and promote understanding and inclusion, helping them navigate and thrive in the world. This movement has expanded to various contexts, emphasizing the universal need for inclusive decision-making processes.(McVey et al., 2023)

These are just two examples demonstrating how social media and the Internet can amplify voices and drive change more rapidly, fostering community-driven innovations in healthcare. However, countless other discussions are happening on social media, highlighting numerous unmet needs and potential solutions. While these platforms offer valuable insights, finding the right information at the right time remains challenging.

The healthcare system, which has the power to create better experiences, often lacks access to these communities. There is no systematic way to integrate the voices of these individuals, leaving many patients feeling isolated and hopeless for change.

The healthcare system could greatly benefit from engaging with these communities, where people freely discuss necessary changes and share critical information. Ignoring these insights and failing to include patients, survivors, and caregivers in decision-making processes means missing out on invaluable expertise. It's essential for the healthcare system to take these underappreciated experts seriously, as listening to them can lead to significant benefits for both those struggling, and the stakeholders involved in healthcare.

Healthcare professionals and researchers often expand their knowledge by sharing information through exclusive meetings, conferences, and platforms inaccessible to the general public. Meanwhile, patients are often left out. They may not have access to professional forums or publish in peer-reviewed journals, but they share valuable insights through tweets, Facebook posts, and YouTube videos.

Although not all this information may be immediately useful or have the potential to be implemented into healthcare settings, many important questions and valuable insights arise from these communities. We are entering an era where people experiment and learn collaboratively, offering immense potential to improve healthcare.

It's crucial to involve clinicians, policymakers, investors, and entrepreneurs in recognizing the expertise of those living with various conditions. Including these individuals in decision-making and other processes will help create a more inclusive and effective healthcare system.