February 8, 2019

Should Digital Patient Communities be More than an Afterthought?

Hanna Phelan
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The notion of the influence of community in human health has always seemed a little fluffy for those in the hard sciences and medicine. When it comes to tackling the big challenges of healthcare today, such as skyrocketing costs and human resource shortages, we have traditionally veered towards seemingly rational interventions such as workflow optimization. However, today we are hearing a growing voice championing the real world importance of the role of community in improving health outcomes and population health - and it’s not just patients and caregivers who are set to benefit.

Before we even dive into the mounting acceptance of the value of patient communities it is worth pausing and considering the general environment of social networks. The likes of Instagram, Tencent's WeChat, and Facebook have taken hold of modern generations. Connectivity has reached new heights with more than a billion monthly users on WeChat alone.

While patient community platforms don’t have the mystique and shiny technological appeal of some of their digital health counterparts (we’re looking at you AI bots) they were actually one of the first on the digital disruption scene - PatientsLikeMe was founded in 2004 and is now offering support around 2,800 conditions, information on treatment and clinical trials and a way for patients or consumers to interact with others in the same boat as them.

Following a flashy JPM this year a number of attendees raised concerns about the cruel irony of the diminishing quality of life of many people struggling to live in San Francisco and the soaring prices and extravagance. This resulted in some calling for the conference to be moved, but is this simply sweeping the realities under the carpet? We think so. What it really comes down to is close consideration of the influence of social determinants for health (SDOH) - within which community plays a key role. When it comes to chronic and complex conditions formal healthcare interventions are only the tip of the iceberg, as crucial as they are. The proliferation of patient communities are a testament to the need of the healthcare community to sit up and take notice of the interwoven systems surrounding human health.

Below we outline what can we learn from these patient communities, where diverse stakeholder groups can benefit, where activity is gaining momentum and what needs to happen for patient communities to have a lasting impact.

The power of patient communities

For Patients and Caregivers: While the digital patient community use case for patients and their caregivers seems glaringly obviously, it has come into play in a surprisingly empty void. In a recent BMJ publication it was cited that 39% of people with breast cancer wished they had a way of knowing the right questions to ask their clinical teams. This statistic alone poignantly conveys the information divide that has been all too prevalent in healthcare and medicine, arguably since the dawn of the profession.

Patient Communities and support channels, such as PatientsLikMe, Smart Patients and Medivizor, offer many potential benefits for patients and their caregivers including:

While the above points are promising, we should also keep in mind that in person human connection and touch is by no means something that can be replaced by a digital intervention, a practice that is in fact now causing great concern as general social media users begin to demonstrate heightened levels of loneliness and social isolation. Beyond informational networks another breed of patient community, such as Wego Health, is developing where patient advocates are being empowered to share their long overlooked voice in return for financial reimbursement.

For Pharma: The Pharmaceutical market is under tremendous pressure to innovate in order to discover new drugs and commercialize their portfolio more effectively. The average cost to develop a drug is $2.6 Billion and takes 10 years. This model is unsustainable. To make matters worse, upon launch, enterprises learn that patients may not value the intervention as expected. Traditionally, clinical trials have suffered from a number of challenges including enrolling patients, identifying trial sites, reducing study drop-off rates, to name a few. 80% of industry clinical trials do not meet patient recruitment timelines and the current drop-off rate across all trials is 30%. What’s the solution? How does one create a more effective research enterprise? The answer just might be more straightforward than we might think – partner with patients.

Patients are more self empowered than ever before and are seeking to get involved in their own self care, identification of clinical trials, and really delve into understanding their options and online patient communities are providing a channel for this.  

A number of patient communities enable researchers to access patients and learn about patient’s needs more directly, and even enable patients to co-design studies. The psycho-social support of these communities may be the key ingredient when it comes to tackling the once insurmountable task of behavior change at a population health level.

Pharma and Life Sciences companies have started to explore solutions such as UK based  Health Unlocked in order to access benefits including:

For pharma this will be an invaluable resources for accessing engaged patients and an expanse of disease  data points.

For Health Systems: Health systems are starting also to increasingly invest efforts in connecting their patients with communities with the goal of keeping those who are discharged from re-entering their facilities, and in giving more ‘involved’ care. Pay-for-performance models will be instrumental in motivating provider interactions with solutions available outside of their own four walls. By linking health outcomes of patients to financial incentives health systems have been motivated to explore the likes of SDOH related solutions and other care pathways. At the moment this is far from standard of care but the increased awareness paired with the growing selection of viable support solutions is promising.

Aside from the mounting promise and activity there may also be justified reluctance from clinicians around the quality of information shared on these platforms and the risk of perpetuated mis-information. A number of digital players in this space are addressing this by marrying clinician facing services with patient and consumer interfaces. WebMD for example are bridging the gap of confidence by offering accredited CME/CPD for medical professionals with more consumer friendly communities and resources.

While more unregulated sources such as ad hoc Facebook and Twitter groups may not be up to the standard of a clinician it is hard to minimize the value of simply having an outlet for pressurized patients and caregivers to easily access a support network. One area where there is a need for evolution is the way in which clinicians familiarize themselves with and recommend and support patients in accessing communities that may be able to provide support.



For Innovators the power of patient communities means better understanding of the solutions they are developing and also the opportunity to provide improved outcomes through the power of targeted connectivity and peer support. Omada for example are matching patient cohorts together based on socio-demographic criteria, bio-metrics and their goals in order to help achieve behaviour change and have observed impressive levels of engagement and outcomes associated with this approach.

Others such as Cancer Aid include a personal cancer record where users can document and record their cancer journey, and connect with other cancer patients for support. So why are we starting to see improved outcomes and increasing engagement in these solutions? In short, at a human level long term chronic conditions, such as diabetes, and extreme diagnoses of cancer for example can be laden with perceived stigma and a strong sense of isolation for those who are plunged into these challenging times, paired with an inevitable decline of energy levels.

Moving from afterthought to center stage - what needs to happen?

We’ve all seen the terms ‘patient engagement’ and ‘patient centricity’ bounced back and forth recently. A question on many people's lips is whether this is more than a press release of well intentioned hyperbole. The patient experience of these communities is ultimately dependent on them identifying an appropriate channel and from there it is how they actually choose to engage

Empirical data is needed in order to truly champion the scaled-up value of these communities - where are they most needed and more effective? Where should we be particularly cautious? Like so many aspects of digital health the full picture still remains to be seen, however it is clear from early interventions that there is a need to consider leveraging these patient communities as extensions of digital and traditional therapeutic interventions.

Patient communities were needed before the digital revolution struck healthcare, digital has just responded to a true need - a lesson for many other early adopters and innovators to keep in mind. Going forward it will be unsurprising, and encouraged, to see digital patient communities woven into traditional and innovative health interventions supporting patients to self manage and other healthcare actors to operate optimally.

Patient communities should be central to the core values of industry. Without gaining insights directly from patients, it’s easy to misstep. It’s important to systematically integrate the patient community into long term strategies, not just engage on a one-off basis.
When choosing a community to partner with, pay attention to the various types of communities - identify their mission, philosophical direction, the types of patients that participate, their patient acquisition and engagement tactics and their revenue model. Wherever possible, identifying “proof points” of the value created by the patient community, such as a publication, will help organizations understand their value.
In some cases, there may be opportunities to co-develop new capabilities to address specific industry needs while also empowering patients.

Carlos Rodarte (Founder & Managing Director, Volar Health LLC, previously early team member at PatientsLikeMe

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