National Network of Depression Centers

FROM THE NATIONAL NETWORK OF DEPRESSION CENTERS

 found that almost half of psychiatric patients use social media-and that most activity is focused on searching for information about mental disorders, services, and medications.

 However, much of the information available on mental health websites may be non-specific and difficult for patients to apply in a personalized way. Online resources that allow patients to better identify other patients like themselves, find support, and share meaningful information about treatment options may offer significant clinical advantages.

In recent years, there has been an explosion of online crowdsourced data from product reviews on Amazon to restaurant reviews on Yelp. Modern consumers are not content to accept the perspectives of experts only-they want to know what the people using and experiencing these products have to say. This trend has direct application within the realm of health care as patients have been taking on more of a traditional consumer role. Patients want to know what to expect with a given treatment, how their experiences compare with those of others, or whether they are alone in coping with their conditions. Who best to answer these questions than others like them?

Founded in 2004 by Jamie and Ben Heywood, PatientsLikeMe has established itself as a platform for collecting patient-generated health data. The PatientsLikeMe platform was designed as an open registry, which allows patients and caregivers to share medical data with each other and facilitates connecting with and learning from others who have similar experiences. By essentially crowdsourcing patient experiences across a variety of chronic diseases, PatientsLikeMe helps patients answer questions that people often ask about their conditions: What is this illness I have? What will this diagnosis or treatment do to me? Am I alone? What might help me get better? What might help me live with it? How do I deal with problems caused by my illness? With over 400,000 registered members, PatientsLikeMe is currently considered the largest online patient-powered research network. While PatientsLikeMe began as an amyotrophic lateral sclerosis–specific community, patients are now sharing their data and experiences with over 2500 different conditions. There are more than 67,000 patients sharing data about mental health conditions.

PatientsLikeMe members have access to a host of tools for tracking health experiences through the collection of both structured and unstructured data. These data can range from a simple free-text update about how the patient is feeling that day to a detailed history of his or her experience with a given condition through the completion of specific questionnaires. In addition to basic demographic information (eg, age, gender, race, ethnicity), patients are able to track other types of structured health data, including conditions, symptoms, treatments, side effects, hospitalization reasons, treatment purposes, and labs. Patients are also able to provide feedback on how well they feel their treatments are working and track their disease status through the use of condition-specific patient-reported outcome measures (PROMs). These PROMs have been adapted and built directly into the PatientsLikeMe platform so that they are integrated into the patient profile.

When adding new information to their profiles, patients may use a wide range of words and terms. Their way of describing health events may differ from how a health care provider, a researcher, or other patients might describe the same experience. To help bridge the potential gaps that this may produce, the tools available to members allow them to track their health using the words and terms of their choice. Behind the scenes, the PatientsLikeMe Health Data Integrity team, made up of clinical pharmacists and nurses, works to connect each experience with the most appropriate set of standardized medical coding using ICD-10; Medical Dictionary for Regulatory Activities; International Classification of Functioning, Disability, and Health; and Systematized Nomenclature of Medicine terms. This underlying coding facilitates the connection and “rolling-up” of related experiences within the PatientsLikeMe medical database.

How can PatientsLikeMe be used as a clinical tool?

. These data-tracking tools allow patients to learn from trends in their data or from the data shared by others and to connect with other patients like themselves. By tracking their health experiences, patients can watch for longitudinal patterns in their data and can look for patterns at a specific time by looking at a vertical point in their charts. By allowing patients to track what treatments they have tried and by layering that information on top of the patient’s own symptom severity reports or daily functioning (“InstantMe”), PatientsLikeMe can help patients learn more about what has helped them to live better (

In addition to learning from patterns in their own data, patients can also learn by reviewing the various reports offered on PatientsLikeMe. These reports are available for each of the treatments, symptoms, and conditions in the medical database; each provides a summary of the data patients have shared on that topic. For example, condition reports provide patients with an overview of who in the community reports this condition, how it affects them, and how they treat it; symptom reports display the impact that a symptom has on a patient’s life and how it is treated. Treatment reports highlight things such as side effects, patient experience, perceived effectiveness, and overall burden of that treatment (

). All of these empower patients to engage in their own health by giving them the information and the insight that they need to be partners in their care.

. After starting a new treatment, patients can track their experience by reporting any changes in symptoms, their perceived effectiveness of the treatment, and any adverse effects they may have experienced. Using the website to log these data between provider visits makes it easier for patients to review their impressions with their clinician. In addition, the ability to stack data (eg, depression symptoms vs treatment effectiveness) may offer insight into indicators important to the clinical course.

For health care professionals, PatientsLikeMe provides a robust tool for gaining insight into the patient experience between appointments. The data tracked in patient profiles can shed light on the symptoms or adverse effects that patients may not immediately report during their often rushed or too short office visits. The self-tracking of important clinical indicators can also help patients reduce the burden of recall and provide greater nuance to disease progression or treatment efficacy.

. While many public mental health forums are available, PatientsLikeMe may offer an additional social support advantage because members can specifically seek out peers who fit their same profile, disease journey, or treatment experience. Finding and communicating with others who have successfully addressed similar problems can potentially offer an important patient perspective in treatment planning.

An additional advantage of mutual support is realized through the harnessing and sharing of tacit knowledge. The importance of such knowledge-clinical “know-how” gained from personal experience-

 in relation to the application of evidence-based medicine.

 We would argue that patients with chronic diseases possess unparalleled insight into how to best manage their conditions, communicate their medical status to others, navigate the health care system, and optimize their treatments. This knowledge may not be conscious but provides a set of daily self-management strategies. For example, depressed patients may have difficulties in managing daily tasks, so they may keep easily prepared meals on hand or find ways to organize their schedules or living environments so that they can manage their energy levels better. These adaptations that patients make-colloquially called “life hacks”-may or may not be shared with others. Offering patients a platform on which to identify these tacit strategies facilitates the identification and dissemination of new personal solutions.

Because the act of tracking one’s data and seeking social support may have a beneficial effect on one’s psychiatric condition, there is a possibility that PatientsLikeMe itself may act as an intervention. Self-monitoring interventions may help depressed patients gain insight into behaviors that improve daily depressive symptoms and emotional awareness. Although PatientsLikeMe has not been subjected to a randomized controlled trial, there are some promising findings.

 A recent study of veterans with epilepsy who used PatientsLikeMe over a 6-week period showed increased epilepsy self-management and self-efficacy scores; the greatest improvement occurred in information management behaviors.

 Preliminary findings from a recent internal survey of 3185 members found that more than 50% of respondents with bipolar disorder felt PatientsLikeMe had helped improve their understanding of how their condition affects them, how to live better with their condition, available treatment options, and related adverse effects along with important factors in making treatment decisions.

Given the shortage of providers and the number of untreated individuals with psychiatric conditions in the US, it is important to identify all means of available support and innovative adjunct treatments. The use and application of crowdsourced patient-generated data can be more than a curiosity to those who buy consumer products. Each psychiatric patient possesses valuable personal data that if shared, may help unlock solutions for managing the illness.

Dr. Chiauzzi is Research Director, and Dr. Lowe is Health Data and Drug Information Clinical Specialist at PatientsLikeMe in Cambridge, MA. The authors report that they own stock options in PatientsLikeMe.

This article is based on Dr. Chiauzzi’s presentation at the 2015 Annual Conference of the National Network of Depression Centers (NNDC). The NNDC, a partner of 

, develops and fosters connections among members to use the power of its network to advance scientific discovery, improve care, and drive the national conversation on depression and related mood disorders through collaborative research efforts.

 Kalckreuth S, Trefflich F, Rummel-Kluge C. Mental health related Internet use among psychiatric patients: a cross-sectional analysis. 

 Thornton T. Tacit knowledge as the unifying factor in evidence based medicine and clinical judgement. 

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 Snippe E, Simons CJ, Hartmann JA, et al. Change in daily life behaviors and depression: within-person and between-person associations. 

 Hixson JD, Barnes D, Parko K, et al. Patients optimizing epilepsy management via an online community (the POEM study). 

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Patients want to know what to expect with a given treatment, how their experiences compare with those of others, or whether they are alone in coping with their conditions. Who best to answer these questions than others like them?

PatientsLikeMe: Crowdsourced Patient Health Data as a Clinical Tool in Psychiatry

Joan Miro’s description of the artistic process: “The works must be conceived with fire in the soul but executed with clinical coolness.”

a movie that revolves around the lives of two poets who struggle with their bipolar disorder. After experiencing accurately portrayed episodes of their illnesses, the male and female lead characters are hospitalized and meet. What ensues are scenes familiar to patients, families, friends, and those who treat them.

The screening was followed by a discussion that included Paul Dalio, the film’s writer and director; Kay Jamison, PhD, who appears in the film; and J. Raymond DePaulo, Jr, MD, Chairman of Psychiatry and Behavioral Sciences at Johns Hopkins University. Drs Jamison and DePaulo serve as the Co-Directors of the Johns Hopkins Mood Disorders Center.

, have also featured protagonists with bipolar disorder, 

 has gone the next step and recognized that film can be a powerful vehicle for conversation and social change in the fight against psychiatric stigma. Pre-release screenings were scheduled across the country: experts from the National Network of Depression Centers (NNDC) member centers were included on panels.

Other leading grassroots organizations-including 

-as well as local foundations partnered as well. To convey his message even more broadly Mr Dalio has released videos with 

, which conveys his own experience with the illness, finding hope, and learning to thrive while embracing treatment-and now combating stigma.

Psychiatric stigma is the systemic and internalized stereotypical negative attitudes against people labeled as mentally ill.

 When conceptualizing stigma it is important to recognize the dynamic interplay between knowledge, attitudes, and behavior. Ignorance or attitudinal or prejudicial beliefs result in a social injustice that goes hand in hand with discriminatory behaviors, causing direct harm to those affected.

Prejudice throughout our society is pervasive: it is not limited to the lay public and it encompasses health care professionals.

 Formal medical education about mental illness has not reduced stigmatizing attitudes. On the contrary, such education has been found to increase stigmatizing attitudes.

 This is particularly troublesome given that medical students experience depression and mental illness at higher rates than the general population and deteriorating mental health during their training.

Interventions to combat stigma have ranged from the use of standard medical curriculums, to interventions which have relied on intergroup contact theory in which individuals have direct exposure to the stigmatized population. Social contact has been effective in decreasing negative attitudes about mental illness.

 However, the impact of psychiatric clerkships on attitudes has been both positive and negative.

Another methodology to combat stigma utilizes the arts. Educational strategies using entertainment may reach audiences that might otherwise not be reached by targeted educational campaigns.

 These interventions are consistent with intergroup contact theory, and filmed interventions have been found to have anti-stigma effects.

What can practicing psychiatrists and mental health professionals do to combat stigma? Given the trend in the translation of health education utilizing media, practicing clinicians might consider how films such as 

 and corresponding content (which can be found on 

) can be used with patients and families. One of the themes evident in the film was the struggle that patients with bipolar disorder experience when it comes to their mood. 

The film portrayed the seduction of mania and how challenging it can be for patients to give up their states of euphoria and what some perceive (accurately or not) to be its benefits. Mr Dalio’s comments on PatientsLikeMe.com include his reflection on coming to terms with bipolar disorder, the painfulness of dulled emotions after initial treatment, and how he ultimately learned to thrive with his illness. When paired together, his film and personal disclosures, have the potential to serve as valuable resource and tool when working with patients and families.

Film can be a powerful vehicle for conversation and social change in the fight against psychiatric stigma.

Practicing psychiatrists and mental health professionals are increasingly challenged to do more with less, shortened lengths of stay, and managing increasingly ill patients in community settings. While there are treatment guidelines of evidence-based practices, patients need to be engaged and a partner in treatment. Discrimination remains all too common for those with mental illness and it often presents obstacles to care.

New approaches are needed to reduce stigma, enhance prevention, and promote early detection and treatment of mental health disorders. Current educational practices need to be evaluated to determine content that reinforces stereotypes and creates a culture of prejudice and discrimination. Non-traditional approaches and interventions can help to engage patient, families, and communities in this conversation.

 won a Best of Show Award in the IndieFEST Film Awards.  Along with this award, the film received an Award of Excellence: Health/Medicine/Science, an Award of Excellence Special Mention: Actress: Leading (Katie Holmes as Carla) and an Award of Excellence Special Mention: Actor: Leading (Luke Kirby as Marco). The film is available digitally via iTunes and Amazon and was released On Demand, DVD and Blu-ray on June 7, 2016. Website: 

Ms Beaudry is Administrative Director and Nurse Research Manager at the Johns Hopkins Mood Disorders Center, Baltimore, Maryland.

1. Joubert P, Rogers S. Strategic scientific and medical writing. Berlin: Springer, 2015. 

http://link.springer.com/book/10.1007/978-3-662-48316-9

. Accessed May 5, 2016
2. Corrigan P, Roe D, Tsang H. 

Challenging the Stigma of Mental Illness.

 Hoboken, NJ: Johns Wiley and Sons; 2011
3. Hawke L, Michalak E, Maxwell V, Parikh S. Reducing stigma toward people with bipolar disorder: Impact of a filmed theatrical intervention based on a personal narrative. International Journal of Social Psychiatry. 2013;60(8):1-10.
4. Kassam A, Glozier N, Leese M, et al. A controlled trial of mental illness related stigma for medical students. BMC Medical Education. 2011;11: 51.
5. Sartorius N, Schulze H. 

Reducing the Stigma of Mental Illness: A Report From a Global Programme of the World Psychiatric Association.

 New York: Cambridge University Press; 2005.
6. Totic S, Stojiljkovic D, Pavlovic Z, et al. Stigmatization of ‘psychiatric label’ by medical and non-medical students. 

 2012:58:455-462.
7. Schwenk T, Davis L,  Wimsatt L. Depression, stigma, and suicidal ideation in medical students. 

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8. Couture S,  Penn D. Interpersonal contact and the stigma of mental illness: A review of the literature. 

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9. Clement S, van Nieuwenhuizen A, Kassam A, et al. Filmed v. live social contact interventions to reduce stigma: randomized controlled trial. 

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10. Faigin D, Stein C. Comparing the effects of live and video-taped theatrical performance in decreasing stigmatization of people with serious mental illness. 

Film can be a powerful vehicle for conversation and social change in the fight against psychiatric stigma. 

Touched With Fire: Film and Social Media Address Stigma 

The global mortality toll for suicide exceeds that of homicide, war, and natural disasters combined.

 Furthermore, the rate of suicide in the US has been increasing over the past 15 years (

). Clearly, it is time to take action: as clinicians, we are in a unique position to help bend the curve and practice the most effective ways to saves lives and bring hope to those affected by suicide.

The good news is that people want to help. According to a Harris Poll conducted in August 2015, nearly 90% of Americans value mental health and physical health equally. People increasingly understand suicide as the tragic outcome of untenable suffering largely rooted in mental illness, and they want to help those at risk.

As the leading organization in the fight against suicide, the American Foundation for Suicide Prevention (AFSP) has set a goal, as part of our Project 2025 initiative, of reducing our nation’s suicide rate 20% by 2025. A growing body of research has given us strategies at population, community, and clinical levels that can be put into practice. It is our hope that more and more mental health professionals will utilize the latest proven modalities to reduce suicide risk. In addition, it is imperative that we work within our communities, and as a nation, to take a public health approach to combatting what is now the 10th leading cause of death in the US.

Suicide prevention: a public health perspective

Suicide prevention activities began in the US in the late 1950s (

). However, it wasn’t until the late 1990s that significant momentum and key milestones began to occur with marked acceleration in the past few years (

Legislative initiatives are sweeping the country. Likewise, public discourse on mental health and suicide prevention has become commonplace in many leading media sources. The Associated Press officially issued new media guidelines in the 2015 

, giving strong recommendations for safe and effective reporting on suicide-and notably urging a ban on the term “committed suicide” (see 

Over the years, AFSP has grown from a small grassroots research-funding organization in 1987 to a strong voice of advocacy in all 50 states-not only for those who have lost a loved one to suicide, but for people with their own “lived experience” of suicide. Alongside our efforts to create a culture that’s smart about mental health, AFSP is the largest private funder of suicide prevention research. (For more about AFSP and its work, go to 

A public health approach is essential if we hope to stem the rising tide of suicide. First, we must invest in science at a level that is commensurate with the morbidity and mortality toll on our nation (see 

). In addition to providing universal education and interventions to ensure that everyone is well versed in the basic common language of mental health, those who work in the public sector (eg, teachers, first responders, police) must recognize the signs of deteriorating mental health or people in crisis.

Children in kindergarten and first grade can be taught important self-efficacy skills. Techniques such as the Good Behavior Game

 have had beneficial results in terms of academic performance 15 years later, but also in terms of mental health and suicidal thinking. Skills can be taught far upstream to save a life much later.

Evidence-based treatments to effectively address suicide risk must be practiced and new techniques developed. Given the shortage of and misdistribution of mental health and even primary care providers in parts of our country, online resources should not be overlooked.

At the policy level, legislative reform must allow for true access to quality mental health care in every region of our country. Finally, measures must also be enacted to reduce access to lethal means for those times when individuals are at heightened risk for suicide.

Research does not allow us to predict who is at imminent risk for suicide in the short term-multiple risk factors converge to increase a person’s risk of suicide. No single event ever causes someone to take his or her life. Health factors, such as mental health conditions and substance use disorders; environmental factors, such as stressful life events and access to lethal means; and historical factors, such as previous suicide attempts or a family history of suicide, can converge to overwhelm an individual’s coping ability.

Fortunately, interacting with these risk factors-and offsetting them-are protective factors such as social support, connectedness, coping skills, cultural/religious beliefs, and problem-solving skills. These protective factors interact in a dynamic way with risk factors and real-time life events and psychosocial stressors to change a person’s risk level over time.

Some of these lifetime risk factors are more amenable to modification than others (

). If we can better understand how these risk and protective factors interrelate, we stand a greater chance of addressing the factors that increase risk, enhancing those that are protective, and thus decreasing the number of completed suicides.

Evidence has shown that restricting access to lethal means saves lives and drives down suicide rates for entire regions. Means matter, and the notion that people who are bent on suicide will find a way simply isn’t true the majority of the time. This point is borne out by several examples. Pesticides are the leading suicide method in Sri Lanka. However, the most highly human-toxic pesticides were banned in the mid-to-late 1990s. Consequently, suicide rates dropped 50% from 1996 to 2005.

In another telling example, domestic coal gas was the leading method of suicide in England and Wales before 1960. By 1970, because of natural changes in gas production, almost all domestic gas in the UK became nontoxic, and suicide rates dropped by roughly one-third.

In yet a third example, the Israeli Defense Forces found that 90% of suicides among soldiers were by firearm, many during weekend leave. In 2006, soldiers were required to leave weapons on base during weekend leave. Weekend suicides dropped significantly. Weekday suicides did not decrease but also did not rise to make up for the weekend decrease. As a result, the suicide rate decreased in this population overall by 40%.

These examples of policy/access changes that led to suicide reductions dispel the myth that people who are suicidal will find a way. The truth is that making lethal means less accessible during critical periods of distress saves lives. Clinicians can educate patients and families about storing lethal means during key times of crisis or distress, which empowers families and friends to act in a way that might save a loved one’s life.

Timing matters: the intense suicidal urge is very short-on a spectrum of minutes to hours. People who survived a serious attempt were asked about the time between the first thought of suicide during that crisis and the actual attempt. Close to 50% of attempts took place within 10 minutes; another 15% of attempts were fairly evenly spread between 11 minutes and 24 hours; the remaining 35% of attempts were made 1 day to 12 months later.

 For many, the period of intense danger lasts only minutes, so helping people to live through peak moments can be lifesaving. These issues of timing also highlight the importance of developing a safety plan well in advance of the crisis.

Findings consistently show that if a person can live through the high-intensity period of suicide risk, or if he survives an attempt, there is a very high likelihood of not re-attempting later in life. A review of 90 studies showed that among those who had made serious attempts, 23% made a subsequent nonfatal attempt during the next decade. But more importantly, 90% or more did 

It is well-known that over 90% of people who died by suicide were suffering from a mental disorder, although all too often undiagnosed, untreated, or undertreated. Furthermore, comorbidity of 2 or more psychiatric conditions is commonplace in cases of suicide. A mental disorder is diagnosed in 30% to 40% of people in treatment who die by suicide; 25% to 30% of people who take their lives tell a therapist or doctor about their distress and thoughts of suicide in the months preceding their death.

It is important to move away from over-reliance on suicidal ideation as the main or sole focus of the suicide risk assessment. Instead, it is vital to explore patients’ suicide risk and protective factors proactively; listen as patients discuss their reasons for living versus their reasons for dying; and help engage them in a therapeutic alliance that puts the patient on the side of staying alive.

The recommendations for pharmacotherapy are simple. First, maximize the management of the patient’s psychiatric condition(s); and second, consider medications that have suicide-specific indications.

Clozapine is the only medication with an FDA indication for suicide risk reduction in people with schizophrenia. Lithium has a strong evidence base for suicide risk reduction as well. In 2 meta-analyses of over 50 studies, lithium showed a 60% to 80% reduction in suicide deaths compared with placebo and other mood-stabilizing medications.

 The rate of suicide attempts was lowered even more significantly than rates of suicide. These findings held true for both unipolar depression and bipolar disorder. If your patient with a mood disorder is at risk for suicide, lithium should be considered.

There are a few other promising medications for suicide risk reduction that we continue to watch. These include ketamine and other NMDA receptor antagonists and partial agonists, which have received FDA breakthrough therapy designations signifying their potential to save lives in the case of life-threatening illness. More data are needed to verify efficacy, safety, dosing, and delivery options.

The research around particular psychotherapeutic modalities has been robust and is now burgeoning with new therapies. Among the better-established therapies for suicide risk reduction are dialectical behavior therapy (DBT) and cognitive behavioral therapy for suicidal patients (CBT-SP). For example, persons who received DBT were half as likely to make a suicide attempt.

 CBT-SP is also extremely effective in preventing repeat attempts in adults who recently attempted suicide.

Safety planning intervention (SPI) can be used in many different settings during or preceding a suicidal crisis. Therapists or peer specialists can facilitate safety planning, but the patient is empowered to identify and use his own customized and stepped levels of coping to avert a crisis.

 A mobile application for SPI has been developed so that patients can utilize their personalized safety plan in real time as needed.

 Another approach is the Collaborative Assessment and Management of Suicidality (CAMS), which has also been shown to be extremely helpful.

A plethora of online resources for suicide risk reduction, such as the DBT and mindfulness-based website (

 An online CBT-based insomnia tool, sleep healthy using the Internet (SHUTi), was developed by researchers from the Black Dog Institute to alleviate symptoms and prevent progression to major depression. Mood Gym, developed by eHub Mental Health at the National Institute for Mental Health Research, is a free online resource that has had positive results in some persons who do not have access to an in-person CBT therapist.

 harkens to its historical and linguistic roots-from a time when suicide was considered a criminal act. Many scientific fields such as neuroscience and epidemiology were in their infancy, particularly with regard to their inquiry into suicide. They now shed light on suicide as a culmination of complex factors, with anguish driven by mental illness as one of the main risk factors.

Thanks to a growing body of research, each day brings us new evidence-based ways to understand, assess, and address suicide risk. Clinicians have a powerful role to play in their work with patients. They can also make a substantial difference by educating their communities about mental health and the role that everyone has to play when it comes to preventing suicide. It is our hope at AFSP that by better equipping clinicians with the latest proven methods and strategies for clinical practice-and by adopting a well-warranted public health approach to suicide prevention-we can turn hope into action and achieve our mission of saving significantly more lives.

This article is based on Dr Moutier’s presentation at the 2015 Annual Conference of the 

 (NNDC). The NNDC, a partner of Psychiatric Times, develops and fosters connections among members to use the power of its network to advance scientific discovery, improve care, and drive the national conversation on depression and mood disorders through collaborative research efforts.

Dr Moutier is the Chief Medical Officer of the American Foundation for Suicide Prevention, a leading private funder of suicide-related research. (The grant review process utilizes 3 levels of peer review similar to that of the National Institute of Mental Health.) She reports that she is a consultant for Otsuka.

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A growing body of research has given us strategies at population, community, and clinical levels that can be put into practice. Details here.

Author | National Network of Depression Centers

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