The Experience and Voice of Mental Health Consumers: The Key to Improving Mental Health Services

Prof. David Roe, Department of Community Mental Health at University of Haifa

World Mental Health Day, which was recently observed on October 10, aims to bring greater awareness to the damaging stigmas that people with mental health issues face on a regular basis. Prof. David Roe, of the University of Haifa’s Department of Community Mental Health, is at the forefront of combating this institutional and societal problem. In our conversation below, Roe breaks down why stigmas around mental health can be so damaging and explains how his work aims to change the discourse around mental health issues in Israel.

1. On this World Mental Health Day, what do you see as the world’s most pressing mental health-related challenge?

The greatest challenge is prevention by reducing some of the known risk factors for mental health problems (e.g. poverty, violence) and ensuring that high-quality mental health treatment is easily accessible to anyone experiencing emotional distress. The delivery of such services must be person-centered, culturally sensitive, and free of stigma.

When more people are aware of available treatment and have access — that is, when they’re not hindered by distance, financial difficulties, waiting lists, or stigma — their chances of recovering are better. The stigma of mental health still persists in today’s society, so people often hide their problems, don’t seek help, or internalize the stigma they are exposed to. They may begin to think that their difficulties are some kind of weakness that they are largely responsible for, and that their future is bleak.

To combat these stigmas, we need national campaigns that convey a clear message that everyone experiences difficulties. When these are overwhelming and too difficult to cope with, one should not hesitate to turn to treatment to help build resilience, inner strength, and support systems. The goal is that people feel as free to seek help for their mental health as they do for a physical ailment or any other problem they are struggling with.

2. What have been the COVID-19 pandemic’s most significant implications for mental health and mental health services, from your perspective?

COVID-19 has exacerbated preexisting issues. People who were financially and physically vulnerable are now even more vulnerable. People’s familiar support structures may have been weakened by quarantine and isolation and there are fewer resources to go around with mental health services stretched thin, and many professionals experiencing burnout. These developments are likely to have a medium- and long-term negative impact on people’s well-being and mental health.

Most of us are social animals, and the social distance required during a pandemic is toxic. Sadly, as with many things in life, those with the most limited resources were the most vulnerable and likely to suffer considerable loneliness and isolation, anxiety, and depression.

This pandemic also serves as a reminder that none of us are immune to life’s obstacles. It teaches humility, mutual dependency, and the importance of friendship, support, and feeling connected to others and one’s community. It is also an opportunity to consider what is important to us, what our values are, and how we want our lives to BE LIKE and not only LOOK LIKE via social media.

3. You focus on the importance of patient-reported data — rather than clinician-reported data — driving clinical decision-making, practice, and policy. To what extent have you seen Israel’s health care system adopt a more patient-driven standard in recent years? How about globally?

Many countries, including Israel, adhere to the vision statements and guidelines from major influential organizations and have been striving toward a more “person-centered” approach. Efforts have been made to provide recovery-oriented services (ROS), which involve the person in treatment planning and respecting his or her self-determination and autonomy. The main challenge from a global perspective is how to apply these humane values to everyday life, in real-world settings.

To achieve these goals, we must find systematic ways to ensure that mental health consumers are heard, and that their voices will have a real impact, which are the goals of mental health services.

Mental illness is associated with stigmatic views and negative stereotypes because of ignorance. People with mental health problems have been negatively portrayed in the media for decades, which has contributed to the stigma. There are many studies revealing how widespread this stigma is globally, and this is only the tip of the iceberg. We still have little appreciation or understanding of all the subtle ways a person diagnosed with a mental illness is stigmatized on a daily basis and its devastating impact, including the voice of the mental health consumer often not being heard.

In the past, there was a tendency to count on the convenient and comfortable method of relying only on staff evaluation of their clients — creating and portraying a distorted reality, capturing only a single angle and perspective. Staff, however, are often biased, they may harbor their own stigmas, and see their patients most often when they are at their worst. A clinician’s assessment often focuses on symptoms and what is wrong, ignoring the social and personal contexts within which they develop. The importance of listening to a person, and understanding their values and preferences, cannot be overstated. For example, a client may prefer lower doses of medication even if this means having more symptoms rather than feeling like a zombie.

For these reasons, it is crucial to include Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs), which assess how consumers feel, and perceive the treatment they receive. It is crucial to make sure their perspective will be integrated into the system to create a larger, broader, and accurate picture, in order to address fundamental questions. These include exploring the meaning of improvement and recovery, desired outcomes, and the best ways to generate progress — then considering the pros and cons of each intervention as they are weighted from different perspectives. Power and political issues clearly influence who is asked about these issues and whose voice has an impact on the policy implications that follow. The mental health consumer, whose life is most directly influenced, must receive center stage.

Clinicians will naturally claim to be all about patient-centered care, until disagreements arise between staff and patients, when the basic beliefs of the clinicians (“I know best and I am the expert”) will become evident. In other words, this is not “bad” staff; it is an emergent system property, grounded in biomedical ethical imperatives such as beneficence (“duty of care, duty to treat”), making it great for ensuring people can access treatment, but not so good for ensuring that patients’ views are taken into account.

4. Can you describe the most important impact that the National Psychiatric Outcome Rehabilitation Monitoring Implementation Project has had on mental health services in Israel?

There are very few examples of strong traditions of routine measurement of any type, and even fewer of PROMs and PREMs. Providing accountability for our services requires us to continuously assess their effectiveness. PROMs and PREMs are needed to ensure that success is determined not only by the important goal of decreasing the severity of symptoms, but rather also by the way each PERSON defines this for him or herself (getting a job or having a satisfying relationship).

The National Psychiatric Outcome Rehabilitation Monitoring Project was a joint collaboration between the Israeli Ministry of Health, the Laszlo N. Tauber Family Foundation and University of Haifa, and made important and unprecedented contributions, including:

People with serious mental illness (SMI) consuming psychiatric rehabilitation services in the community were invited to participate in a comprehensive survey which enabled them to portray THEIR experience and evaluate how THEY were doing along a continuum of domains from the more personal and subjective. For example, what their goals are and how satisfied they are across various domains of their life as well as their general functioning, in addition to evaluating their experience of the services they received.

Staff completed the same in a manner mirroring patients — thus filling in their assessment of each of their clients on the SAME domain.

On the INDIVIDUAL level, it allowed each consumer to receive a “personal feedback” chart that mirrored how THEY see their situation. As this was done every year, it was possible to visualize changes (through graphs) over time and within specific domains. It provided a unique opportunity for them to reflect on how they are doing and help them make decisions based on what they have learned. For example, in which domains they plan on making changes, and what kind of assistance they need to do so. During the assessment process, both the consumer and staff member could see the gaps in their ratings and better understand the other’s perspective, which helped them reach an agreement on goals.

Based on the data, we sent each agency a summary of the outcomes of clients who received treatment at their agency, and how these compared to other similar agencies. This gave them an opportunity to see how their clients are doing (based on their and their clients’ ratings) across various domains and try to improve their service based on the feedback.

In addition, we produced annual summary reports that we sent to policymakers so they could make data-informed decisions.

Finally, the data collecting in the project was used to make important contributions to the scientific community. For example, one of the many papers we published reported that patients’ ratings of their quality of life was a significant predictor of their likelihood to be hospitalized 6 and 12 months later when controlling for traditional variables that research has shown to predict future hospitalization. This emphasizes that quality of life, beyond being a desired outcome in its own right, influences “harder” and more “objective” outcomes such as the likelihood to be re-hospitalized. This helps stress the importance of a holistic perspective that takes into account various domains of a person’s life and their mutual impacts: In order to reduce hospitalization rates, it is important to not only focus on symptom reduction but rather on helping a person build a personally satisfying life.

The project was perhaps the most comprehensive and ambitious of its kind, as it integrated client and staff ratings over time and across several domains while taking advantage of the data in a variety of ways to benefit all parties involved. The project also received a fair amount of recognition, including an invitation to present at the OECD headquarters in Paris as well as several other stages and conferences.



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