We are witnessing the emergence of a new phenomenon in health care: self-organizing, online communities of patients, caregivers, clinicians, researchers, academics, and industry, all focused on a particular disease.

Patient-led sites that offer support and information are the most well-known. They typically offer a moderated forum, blogs, advice, support, academic references, and a place to shop for relevant products. IBDrelief, a well-managed platform focused on inflammatory bowel disease, is just one example. 

But the world of online health extends well beyond forums, blogs, and information. Platforms like Care Opinion (previously Patient Opinion) provide a way for patients, caregivers, and health care staff to share stories of care and develop solutions for problems across the system. Research-driven communities such as Patients Like Me pool patient feedback about the efficacy of therapies, side effects, and disease progression to the benefit of patients and clinicians, industry players, and academics. And campaigning projects, such as the Genetic Alliance, aim to influence policy and funding decisions for their conditions. 

Why online health communities matter

With funding from the UK foundations Health Foundation and the Guy’s and St. Thomas’ Charity, we conducted 72 interviews in 2015 and 2016 with mainly patient-led, UK-based patient groups, online health bloggers, clinicians, health service managers, entrepreneurs, venture capitalists, academics, and policymakers. Our aim was to better understand the emerging field of online health communities, and determine whether and how to accelerate successful projects.

To start, we identified four main reasons why online health communities like the ones we mentioned above are valuable:

  1. They provide patients and caregivers with new resources. This can include information, solidarity, and support. One community member wrote in a forum, “When I finally found a Facebook group for people who had been discharged post-transplant, I cried every time I logged in for three weeks. “Here at last were people who understood exactly what I was going through.”
  2. They offer new insights to non-patients. Individual clinicians can learn how patients experience their disease and care: “I had no idea that ‘brain fog’ was one of the commonest symptoms for people with multiple sclerosis until I saw how patients were ranking their symptoms on PatientsLikeMe,” a family physician told us. Researchers can learn about the processes and outcomes of care. “It turns out that better ways to deal with pain was a key priority for people with arthritis,” one researcher told us. “This triggered a real change in our research funding priorities.”
  3. They challenge traditional power dynamics between patients and clinicians. As one patient wrote, “We don’t want to be ‘consulted.’ We want to park our tanks on the hospital’s lawn.”
  4. They form part of a growing trend in data collection that pushes the boundaries of traditional health care. Other related efforts include the quantified self movement, which tries to incorporate data acquisition into aspects of a person's daily life, Apple’s ResearchKit and CareKit, which help medical researchers and individuals gather data, and the growing ubiquity of biometrics, the collection of data like fingerprints and facial-recognition scans used to provide access or verification. Movements like #WeAreNotWaiting, for people with diabetes, support patient-created hacks and innovations.

Video supported by Guy's and St. Thomas’ Charity and the Health Foundation

Online health platforms form an ecology of disparate and loosely bound communities operating on a variety of niche digital platforms that are largely evolving outside the world of traditional health policy and health care institutions. As of yet, there is little coordination, empirical research, or work to theoretically describe these online communities. However, we know from other, well-known digital platforms like KickStarter38 DegreesMoveOn, and OpenIDEO just how quickly online platforms can evolve, disrupt old business models, and create entirely new ones.

New tools to meet unmet needs

Health care services have found it hard to deliver on a wide range of patient demands, including peer-to-peer support, reliable information about the latest advances, ways to find and exchange information about the “lived experience” of particular conditions and therapies, and the desire to level the patient-health care provider power imbalance. The Internet and social media offer the kind of peer-to-peer technology patients can leverage to meet their needs directly.

Over the last 10 years, these technologies have led to a set of significant patient-led innovations, shaped and enabled by shifts in digital technology, including:

  • Cheaper digital tools. Less-expensive tools lead to lower transaction costs, which put tools previously reserved for medical elites within reach of patients. Examples include patient-led research databases that curate relevant findings for a particular condition; patient-led or facilitated research; and patient-created technology, such as the remote sensing technology for ileostomy bags developed by patient Michael Seres.
  • Gift economies. Forums where people share their experience with a disease and others provide feedback to improve services are examples of gift economies, where members give valuable services to each other freely and with no expectation of financial reward. Families, teams, and professional organizations all use gift economies to motivate their members via a judicious mixture of altruism, gossip, reputation, and obligation. For this reason, they lie below the radar of both capital and formal organizations.

In principle, these features are just as accessible to health service providers as patients. Online health communities have significant potential to realize new forms of social capital for patients and health services in terms of support, solidarity, knowledge, and innovation. However, this potential remains untapped for several reasons we outline later.

Community platforms in action

The majority of online health communities are focused on two critical contexts: health care services and disease.

In the UK, the tax-funded National Health Service (NHS) delivers more than 90 percent of care. Like most other health care systems, NHS lacks the sophistication required to interact well with online health communities. Its digital systems are opaque and largely inaccessible to patients. Its care pathways offer little opportunity for self-care and are locked into specialist referral systems. Many staff view online interactions in general, and social media in particular, with suspicion.

Other online health communities focus on specific diseases. The nature of a disease, its trajectory, and its likely outcome shape the nature of the online community associated with it. While all patients seek information, the extent to which they want to engage with online communities varies by the disease.

People with long term, life threatening, or chronically disabling diseases with little or no cognitive decline are most likely to engage with online communities. Individuals experiencing short-term conditions, palliative care, non-life threatening and non-chronically disabling conditions are least likely to engage with online communities. For those who experience cognitive decline as part of their condition, family and caregivers are more likely to engage with the online communities on their behalf.

Assessing the challenges

Our research identified some of the core challenges facing online health communities that, if resolved, could pave the way for significant growth and development.

1. Using technology to level the power of traditional health care providers

The cost of technology is collapsing and, as a result, access to all kinds of devices, apps, and functionality is rapidly increasing. These benefits accrue more quickly to individuals than they do to organizations. For individuals, procuring technology is as easy as logging on, and governance is as simple as checking a box to accept terms and conditions. By contrast, health systems are weighed down by specialist requirements, complex procurement procedures, and high levels of governance.

A hospital is responsible not only for its patients and its bottom line, but also to its workforce, regulators, taxpayers, and the environment. It must support local research and teaching, integrate with other providers, and pay attention to its anchor effect on the local economy. These accountabilities frequently conflict thus reducing agility and ability to innovate. The need to deliver high-risk, complex, personalized procedures with multiple hand-offs along each patient’s journey makes meeting these accountabilities an even greater challenge.

One patient described his experience with this challenge: “After a lot of work with the hospital to get it approved, I was about to do my first Skype from home [with] the transplant team when the specialized nurses at the other end walked out saying they didn’t feel comfortable using Skype. They said it was an information governance thing. It might have been, but it was also fear of the unknown.”

Compared to the NHS, UK citizens get a much better return on investment for their spending on technology. Households spend an average of 15.50 pounds (about $21.50) per week on iPads, smart phones, and connectivity, which is around 10 times the 1 billion pounds (about $1.4 billion) per year the NHS invests in its Internet technology. This is why digital technology in general is a potent leveller of social and institutional hierarchies, and why over time the functionality available to citizens is likely to surpass that available for health care providers across many fronts, including information access, personal biosensors, and digital diagnostic tools. When online health communities use these tools, it frequently means that power shifts away from organizations.

Health care systems are locked into old ways and can sometimes feel threatened when patients, newly empowered by online communities, step outside the traditional hierarchies and demand more-equal relationships. Context collapse—the online phenomenon that happens when online exchanges lay bare all kinds of previously hidden personal and professional information about staff (and patients)—exacerbates these organizational anxieties.

“It’s bad enough that my patients can Google me,” one cardiologist told us. “But even worse is when the junior cardiology lab nurse sends me a friend request on Facebook. There’s an assumption of intimacy that isn’t supported in our real-life interactions.”

2. Overcoming the constraints of finance and business models

Our analysis suggests that developing viable business models is particularly hard for online health communities for two reasons. First, the winner-takes-all advertising model of Facebook does not apply to online health communities, where the ability to scale is antithetical to the need for privacy and relatively intimate communities. Second, the gift economies that underpin online communities have inherent incompatibilities with the profit-seeking culture of digital startups and investors.

On this front, opinions between platform managers and participants tended to divide sharply: “If these [online health communities] are going to work, then someone, somewhere is going to have to make a shed load of money in order to drive them to scale,” said one manager of a digital health platform company.

Patients, by contrast, sense that any attempts to monetize their communities will compromise their underlying altruism. “The community fell apart as soon as people realized that someone was trying to make money from us,” said one online community member.

This tension between the market economies of the entrepreneurial world and the gift economies of community life reflects a deep problem: The falling costs of technological production and the abundance of digital products undermine market-based mechanisms. As more and more value escapes into online interactions, price, markets, and the standard capitalist economy capture less and less value. Online health communities may create huge social capital, but they rarely deliver the financial returns expected by the market.

3. Objective truth rules in modern medicine

Objective truth is central to the traditional model of medical care. The system places clinical outcomes over social outcomes, success over failure, and clarity over confusion, all driving us inexorably toward a truth independent of human experience, networks, or bias. It leaves little room for subjective experience, preference, emotion, and interpretation.

That’s not so in the messy world of online communities, where all experience contributes to learning. Social outcomes sit alongside and sometimes above clinical ones. Where health care has a low tolerance of failure due to the consequences that can follow, online health communities thrive on stories of what went wrong and how people battled the system.

The result is that the medical and the social, for all intents and purposes, operate in different realms. Objective truth still calls the shots in terms of resource allocation, decision-making, and operation of our health services. This stifles attempts to harness the more subjective data generated in online communities.

4. Understanding that scale is a bug, not a feature

Anyone who builds a new online community or app dreams of scaling. The success of a few billion-dollar “unicorns” feeds this assumption that scale is automatically good.

We too initially assumed that online communities could and should scale. But in interviews and field surveys, we learned that participants tend to value more intimate communities. To the chagrin of platform owners, online health communities tend to encourage fragmentation. This happens for several reasons:

  • The experience of ill health is inherently more private than online discussions of other topics.
  • The trusted relationships that people value as part of these communities have a functional size limit. One threshold is “Dunbar’s number,” which describes the cognitive upper limit for maintaining stable social relationships as 150 people. Many interviewees reported that this number felt too big, saying things like, “I use Twitter to reach out to people. But for myself, for things that really matter, I depend on a much smaller closed group that I really trust.”
  • Size doesn’t matter. The absolute number of people who have read your post is much less important than knowing your mother, your best friend, or the person in Auckland who has been through the same thing has read it.
  • The technology that powers online communities is cheap and easy to use, lowering the costs for communities to split. This helps keep groups small and focused on issues relevant to the current members, while simultaneously reducing return on investment for platform owners and investors.
  • We assume that scaling up is a good thing, when the evidence points in a different direction. A University of Pennsylvania study shows that large networks actually deliver lower levels of social integration and knowledge transfer than smaller ones.
  • Scaling requires homogeneity. Efficient scaling requires social and business models to work at any scale, and in a way that is entirely independent of the local context. In contrast, heterogeneity is at the heart of online health communities.

The tendency of communities to fork and fragment is not a problem. Rather, it is essential for allowing participants to maintain intimacy, follow their own interests, and deal with internal disagreements.

Overcoming the challenges

These features of online communities undermine the standard mindset of digital entrepreneurs and investors seeking to build large-scale, relatively homogenous online platforms that they can easily monetize. So how are patients, platform owners, and technologists responding?

1. Building honest broker platforms

Many online health communities aim to design an “honest broker” platform, where independence, transparency, honesty, and values drive efforts to foster high-quality relationships between all parties.

Many of the organizations we interviewed aimed to design an “honest broker” platform, where independence, transparency, honesty, and values drive efforts to foster high-quality relationships between all parties. Compared to patient support groups, organizations that sit between patients and health services were more likely to explicitly aim for this role. Conversely, health care providers often felt they could act as their own honest broker and moved forward on a “build it and they will come” basis, only to be disappointed by empty chat rooms and few comments.

2. Designing for internal motivation

People want their experiences to matter. Offered responsibility, most people respond by stepping up and taking it. One of the strengths of online communities is that they can provide new ways to reinforce internal motivation. Care Opinion, for example, shows how many staff have read any given story. This not only reinforces an author’s internal motivation, but also motivates busy health care staff to take an issue more seriously, as they can see who else is following a particular story.

As we have seen, external motivation in the form of money or other incentives actively undermines the gift economies on which online health communities are built. This is particularly true for those who start, run, and curate these communities. Without a central inspired and motivated individual, most online health communities are destined to fail. At their best, these individuals also reach out and build relationships with influential clinicians, as in the case of Findacure, an online community focused on rare diseases that grew out of a collaboration between a father whose sons were born with the genetic disorder alkaptonuria and a physician dedicated to supporting the development of treatments for small patient populations. In these collaborations, both patients and clinicians are driven by internal motivations, a point that helps us understand why they resist being co-opted by the more formal health care system.

3. Building architecture for emergence

The architecture of online community sites is also important. But building for emergence—allowing site functionality to develop iteratively—goes far beyond getting the user experience right. As Sherry Turkle of MIT said at a 2010 event, “Technology proposes the architecture of our intimacies.” Our research has shown we need architectures that foster the emergence of trustful relationships and communities, for both users and organizations.

For users, this includes designing for the particular nature of the disease and its trajectory; understanding that engagement (and hence communities) emerge via multiple small steps; and recognizing that smallness, not scale, builds intimacy and trust. For example, users of an online community for cancer survivors wanted to set up closed groups within the wider community when particular members were approaching death. This unanticipated need required building new functionality. Providing the privacy and intimacy the group required also meant that the platform owners (who were themselves cancer survivors) needed to let go of some control, and allow entirely private groups to flourish outside their control but within their platform.

Bringing online health communities to life

Given the range of problems facing online health communities, we need a diversity of business models to maximize the chances of finding solutions that work. We must encourage technology that supports the diversity of need and interest necessary for online communities to properly serve users. And we must design solutions that accommodate the implications of different diseases, as well as the needs of caregivers and patients.

Our hypothesis of clustered scaling describes the dynamics of group formation that enable online health communities to scale to their natural limits—typically remaining small entities that differentiate themselves through their granular expertise or focus. A range of factors—including the private nature of disease, the relative inability to monetize interactions, and the desire for intimacy around personal online interactions—impose these limits. Clustered scaling has two main consequences. First, online heath communities tend to neutralize the advertising-based business model that underpins most social media platforms: The audience is smaller, it actively maintains its privacy, and selling stuff to people who are sick is more complicated than selling to healthy consumers. Second, online health communities tend to fragment into new communities rather than cohere into winner-takes-all behemoths. This subverts the venture capital-driven investment path of most digital businesses.

The clustered scaling framework provides a way for online health communities to escape a perverse obsession with size, and instead turn toward a path of appropriately scaled communities that are fit for their purpose, and that prioritize people over profit and process over output.

Reconciling opposing forces of change

We live in a complex, messy world. Objective truth is in partial retreat because it is becoming clear that there are few absolute answers to anything anymore. Patients, their insights, and their rising power are an intrinsic part of this new world.

The social aspects of digital technologies are empowering patients while professionals and traditional health care providers remain constrained by their need to deliver complex patterns of care with little tolerance of error in high-risk clinical situations. As a result, all players in the clinical dance—patients, clinicians, and administrators—are experiencing increasing cognitive dissonance. The way institutional health services envisage change is at odds with the new online world.

For those in positions of power, the current great white hope for resolving these dilemmas is big data and machine learning, which reinforce centralized power. These technologies will undoubtedly change health care while the new peer-to-peer forces continue running alongside.

Both the traditional hierarchies of health care, and the modern promise of big data and machine learning are threatened by these anarchic forces of citizens empowered by their own expanding peer-to-peer abilities. These battles will be fought out at political, institutional, and investor levels. Going forward, the challenge is finding ways to reconcile these forces to the benefit of health care recipients and providers alike.

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