Transforming mental healthcare through research

The research we’ve conducted has delivered breakthroughs in our understanding and treatment of mental health conditions. For example, we have:

• Proven that online, typed therapy is as effective as face-to-face therapy.
• Identified specific elements of therapy that are associated with better patient outcomes.
• Developed an algorithm that can identify different types of depression from patients’ mental health measures. We are using this to develop and test targeted, precision therapies that are more effective at treating depression.
• Built models that use health, care and socio-demographic data to predict patients’ pathways to recovery, and identify patients who are in need of additional support.
• Demonstrated that the healthcare and societal costs caused by therapy wait-list delays are much greater than the cost of delivering therapy.

We want the knowledge generated by our research to benefit as many people as possible. We therefore publish our findings in peer-reviewed scientific journals and share our work with our patients, the public, researchers, clinicians, policymakers, the NHS, and other global healthcare providers and payers.

In this way, our research contributes to continually improving the mental healthcare delivered by ieso and other providers, and we can evidence to our patients the value they add to mental health science and treatment by sharing their health and care data with us for research.

Our scientists, clinicians and experts-by-lived-experience are also using the insights from our research to build clinically validated digital products that make effective therapy available to many more people.

We prioritise research that is likely to deliver benefits for patients. The research we conduct falls into two main categories:

1. Analysis of routinely collected health and care data

By analysing patterns in the aggregated, de-identified health, care and socio-demographic data routinely collected from our patients as they complete a course of therapy, our scientists and clinicians are able to learn more about the drivers of mental health conditions, why different people respond better to different types of treatment, and how cost effective treatments are for the health system. We use this information to make our existing products and services more effective, and to develop new ones. We also use the insights from our analyses to form new hypotheses about the causes of mental health conditions and treatment response, which we then test with experimental studies and clinical trials.

2. Research studies and clinical trials

When we want to formally evaluate a new concept or product, we conduct research studies and clinical trials that are designed to test a specific hypothesis. For example, we use research studies and clinical trials when we need to:

• Evaluate or compare the effectiveness of different therapy protocols;
• Formally test hypotheses generated by analysing routinely collected health and care data;
• Develop, test, evaluate and validate the safety and effectiveness of new products.

All of our patients receive the highest quality of care. This is never affected by the choices a patient makes about sharing their health and care data for research, or taking part in a research study or clinical trial.

To protect our patients’ safety, wellbeing and freedom of choice, we comply with (1) local data privacy laws, policies and regulations (2) international standards on data security (e.g., ISO 27001), and (3) Good Research and Clinical Practice guidelines.  

For research that involves analysis of routinely collected health and care data, UK patients can opt out of sharing their confidential patient information for research – either by using the national data opt-out service or by contacting ieso directly.

For research studies and clinical trials, patients and research volunteers must always give their voluntary informed consent before participating. They can choose to withdraw from any research study or clinical trial at any time without giving a reason. To help people decide whether they would like to participate, we provide detailed information about:

• What is involved;
• What the benefits and risks are;
• What personal data will be collected, how it will be used, and how it will be kept safe and secure;
• How they can stop participating in the research;
• How and when they can withdraw their data from the research;
• Who they can speak to if they have any questions or concerns, or want to access additional support.

Please see our privacy notices for more information.

Whenever patients or research volunteers are invited to participate in a research study or clinical trial, there are potential benefits and risks involved. At ieso, we are committed to ethical research practices that protect the safety, dignity and wellbeing of our patients and research volunteers, and comply with international guidelines on Good Research and Clinical Practice. This means that, before starting a new research study or clinical trial, we seek proportionate ethical review to confirm:

• The benefits of the research outweigh the risks for our patients and/or research volunteers;
• Appropriate risk mitigation strategies are in place to reduce the risk of harm;
• The benefits and risks of the research are effectively communicated to our patients and/or research volunteers, so that their consent to participate is fully informed;
• Appropriate data management procedures are in place to protect the data collected from our patients and/or research volunteers, and keep it confidential;
• Appropriate procedures are in place to identify and manage any harmful or adverse events that result from the research.

Patient data refers to the information in a patient’s health record that we hold and process. It includes information about their:

• health (e.g., mental health measures; other physical and mental health conditions);
• care (e.g., therapy delivered; treatment outcomes; other treatment and medication);
• socio-demographic information (e.g., age, gender, ethnicity, geography, work status);
• contact details (e.g., name, email, address, phone number).

Please see our privacy notices for more information.

We take data privacy extremely seriously. Mental health is deeply personal; we store patient data confidentially, protect it using the highest encryption and security standards, and use it responsibly, in accordance with local laws, regulations and standards. We are committed to being transparent about how we collect, use, retain, share and protect patient data for treatment and research, so that our patients understand the benefits and risks and can make informed choices about how their data is used.

Please see our privacy notices for more information.

‍

The personal information our patients share with ieso is confidential. We collect the minimum amount of data required for specified treatment, safeguarding and research purposes. We minimise access to patient data on a strict need-to-know basis, and take steps to de-identify it as much as possible. Patients’ health and care data is only accessed in connection with their personally identifiable information when there is a treatment delivery or safeguarding reason to do so. For example:

• Our therapists, clinical supervisors and patient services team can access a patient’s health and care data alongside the personally identifiable information that is required to deliver therapy to that patient and keep them safe.
• Our approved scientists and researchers can access de-identified health and care data, that is stored separately from a patient’s personally identifiable information, to carry out research and analysis.
• In the US, our US member support team may access a patient’s personally identifiable information if they are contacted by a patient to support with a technical issue with one of our digital products. UK patients’ personally identifiable information, including their individual-level health and care data, is never accessed by or shared with US-based staff.
• Our engineers may access a patient’s personally identifiable information to support with a technical issue with one of our products or services.

We share personally identifiable information about a patient’s health and care with the NHS (in the case of UK NHS patients) or a patient’s referrer (in the case of private UK and US patients) where there is a contractual requirement to do so to manage treatment delivery and safeguarding. This may include questionnaire scores, progress measures and treatment outcomes. If there is a serious risk of harm to a person, or a requirement by law, we may share a patient’s personally identifiable information with emergency services.

Our general policy is to never share transcripts of the typed conversations a patient has with their therapist or digital guide with anyone outside ieso. In extremely rare circumstances, we may be legally or contractually required to share a patient’s therapy transcripts with the NHS (UK NHS patients), their referrer (private UK and US patients), or law enforcement bodies, for example in the case of a death, serious harm to a person, or a police-related matter.  

We partner with researchers at universities and other demonstrably trustworthy organisations, who can contribute unique methods and expertise to enable additional research that improves mental health outcomes for more people. We only ever share de-identified or anonymised patient data with external researchers for specified research purposes as set out in legally binding data sharing agreements.

Please see our privacy notices for more information.

No. We never sell patient data or share it for advertising or marketing.

We recognise how important the retention of data is to our patients. The data our patients share with us can be very sensitive and relates to their mental health and personal lives. For this reason, we set our retention policies with care and diligence, informed by best practice guidance from relevant authorities (e.g., the NHS Transformation Directorate's Records Management Code of Practice) and experts-by-lived-experience.

We retain the minimum amount of data required for specified treatment, safeguarding and research purposes, and for specified durations. Because of the laws, regulations and standards we are required to adhere to in different geographies and contexts (e.g., the level of treatment or intervention a patient receives), there are differences in the specific retention policies for our different services and products in the UK and US.

Please see our privacy notices for more information.

Health data is about people, so it is important that people have a say in how it is used.

Health and research organisations, like ieso, are required to comply with laws, policies, regulations and standards that keep patients’ data confidential, safe and secure.

At ieso, we recognise that using patient data in a way that is trustworthy requires us to do more. We are committed to involving patients, experts-by-lived-experience and the broader public in shaping how we use patient data for research, so that we can understand and address their needs, expectations and concerns.

This starts with making sure we provide clear information about how we collect, use, retain, share and protect patient data for treatment and research, so that our patients understand the benefits and risks, and can make informed choices about how their data is used.

We know that we must also keep our dialogue with patients and the public open, so that we can adapt our practices as technological capabilities, regulations and societal expectations evolve. We are committed to continually learning and improving in public.