This article was originally published in the ACNEM Journal (June 2025) and explores the use of personalised data to support PCOS self-management.

Introduction

Poly Cystic Ovarian Syndrome (PCOS) is driven by complex metabolic dysfunctions1 that are expressed in genetically prone people resulting from a variety of different nutritional, lifestyle and environmental issues. It’s prevalence in women world-wide is around 13%.

Research reveals influences from not only diet, exercise and sedentary patterns, sleep and emotional stress, but also from in-utero impacts, the gut microbiome and toxic loads. It is well recognised that the first line of treatment is lifestyl medicine, but attrition rates remain very high.

It is common across people who are diagnosed with PCOS to experience a range of both physical, reproductive, emotional, mental and social symptoms that further complicate the treatment pathways. These symptoms include: a sense of frustration of not fitting into the “norms” of society, fears around lower fertility, body image issues, disordered eating, body dissatisfaction, lowered mood and anxiety, and persistent fatigue, sugar cravings and difficulties losing weight. In addition, PCOS can cause long term psycho-social impacts. Women with PCOS often feel over-looked, disempowered, and unmotivated.

In addition to reproductive and psycho-social impacts, PCOS is also associated with decreased health-related quality of life and increased risk of type 2 diabetes and cardio-vascular disease. Insulin resistance and cortisol dysregulation are key pathological findings in women with PCOS, even in those who are lean.

It is without questions that PCOS is a complex, multisystem condition with lifelong bio-psycho-social health implications, but women with PCOS report a greater distrust in their primary care providers, and research suggests there is more life dissatisfaction from women with PCOS as compared to controls. Women with PCOS often report feeling dismissed, and misunderstood. Anecdotally, women commonly report that the only intervention they have been offered by their primary care provider was “to lose weight and/or go on the pill.

Due to its complexity PCOS requires a multi-factorial approach, but it is not surprising that this complexity adds to the barriers for effective management of this condition. Treatment barriers include the fact that primary health providers often fail to explore in depth the convoluted bio-psycho-social features and implications of the condition, such as:

1. Low energy and poor appetite regulation.
2. Low metabolic flexibility and challenges with adiposity and weight management.
3. Disordered eating and body image distress.
4. Fatigue and sleep challenges, including sleep apnoea.
5. Depression, hopelessness and fears of the future.

Without recognition and validation these symptoms and issues contribute to the low attrition rates for lifestyle medicine change.

Self-management and health literacy are key to long term success and outcomes. Self-management behaviours are highly subjective and impacted by one’s understanding, and sense of control over the condition.

Behaviour of self-management may include independent monitoring of disease markers, developing an action plan upon deterioration in symptoms, implementing some social or psychological strategies to help adapt to changes, and increasing a person’s sense of responsibility for their choices and adherence to advice. Health literacy forms part of effective self-management and is an important determinant of success in health interventions.

Given the restrictions in time management and structural problems in most mainstream general practices, it is not surprising that the complex issues facing people with PCOS are overlooked, poorly managed and often result in distress and distrust in the patient. Despite regular research articles presented in the RACGP’s journal the AFP or guidelines easily found online from the NHS, there is little mention of treatment beyond weight loss, fertility support, or cosmetic issues due to hirsutism.

Aim:

The Vively app is a data driven health app developed to support long term behaviour change for chronic disease management. The aim of the pilot study was to assess the app using personalised data to educate, empower, inspire and motivate, using continuous glucose monitoring, heart rate variability, exercise impact, sleep and dietary habits. This app will aim to support a person with PCOS to see and reflect in real time the impact of their choices on some fundamental markers of disease stabilisation to help with self-management and self-empowerment.

Methodology

The app

Vively is a metabolic health app, which is underpinned by scientifically validated research in lifestyle medicine and the intersection of behavioural choices, symptomatology, and self-management. It educates the user through their dynamic health data about the inter-related factors that influence both short- and long-term health, simplifying complexity into actionable insights. In addition, it seeks to help people understand the metabolic impacts of their health choices, giving the users an opportunity to engage in prevention of this multi-system condition.

One of its key features is the use of continuous glucose monitoring (CGM). The user can input diet data, either by way of photography, description or linking with My fitness Pal, exercise data via wearables, sleep data and linking HRV data are also linkable. There is also a cycle tracker feature embedded in the app to help women with PCOS view the impact of cycles on lifestyle behaviours. The user can also add relevant incidents such as stressful events, use of medications, late nights or illnesses which can add flavour to the data. Of course, all can be added or adapted manually as well.

Survey design and administration

A cross-sectional observational survey was administered online to Vively users who self-reported a diagnosis of PCOS. The survey consisted of 9 questions of which [8] were multiple choice and [1] was an open-ended formats. Topics included symptom changes, behavioural adjustments, app engagement, and perceived empowerment.

Question samples:

• By stabilising your blood glucose, have you seen a change in your PCOS symptoms?
• Since using Vively, do you feel more empowered to manage your PCOS?
• Since using Vively do you understand your PCOS and/ or your body more? 

The survey was internally reviewed by clinical advisors for clarity and comprehensiveness.

Study participants and recruitment

Participants for the pilot study were recruited via email outreach. Only those that met the inclusion criteria were included in the study. Inclusion criteria included self- reported PCOS diagnosis, active use of the app for >30 days, and consent to participate. There was no control group.

The study participant’s data was collected using a secure online survey tool after informed consent was obtained. The data was anonymised and securely stored in accordance with privacy policies.

Results and discussions

A total of 139 female Vively app users who self reported having been diagnosed with PCOS were invited to participate in the pilot study. The pilot study consisted of 14 respondents who met eligibility criteria of which 79% reported to find the Vively app beneficial in helping them manage their PCOS.

Furthermore, 57% of the participants felt that by stabilising their blood glucose, they observed a positive change in their PCOS symptoms.

One user commented that she experienced a “reduction in the severity of symptoms, my hair growing back, my menstrual cycle being more “normal”, improved sleep quantity and quality and skin quality improving”.

Another commented “more regular periods, better sleep, weight loss”, whilst another mentioned “losing weight, mood feels more stable, feel happier and healthier in general”.

When asked to reflect on whether they noticed an intersection between their physical energy, mood or stress and their blood glucose levels and 86% of participants reported that they had noticed a correlation. In addition, 71% of users noticed a relationship between the quality/ quantity of their sleep and their blood glucose levels.

92.9% study participants reported an improvement in common symptoms of PCOS, with 10 out 14 participants experiencing at least 2 symptoms improvements and 5 experiencing at least 3. For example, improvement in cravings and diet choices was reported by 76% of the respondent, whereas 43% and 50% of study participants reported an improvement in energy levels and mood, respectively.

1. Cravings and diet choices: 76%
2. Energy: 43%
3. Mood: 50%

100% of study participants reported that the Vively app had helped them manage to maintain a particular healthy lifestyle intervention, with 13/14 experiencing at least 2 healthy interventions and 10 out of 14 participants experiencing at least 3 or more.

Study participants most frequently reported that the Vively app had helped them to eat higher fibre and less processed foods (both 64%), followed by eating fewer simple carbohydrates (57%) and engaging in a more consistent exercise program (43%). Fewer app users reported it being beneficial for stress management (36%) or reducing alcohol intake (36%).

Arguably the most important and potentially most significant finding was that 86% of users felt that by using the Vively app they had developed a greater understanding of the condition and their body. Furthermore, 93% of users reported feeling more empowered to manage their PCOS. One participant reported that whilst she hadn’t noticed an improvement in any of the listed symptoms, she did report she was eating foods higher in fibre and had a more consistent exercise program.

Whilst this questionnaire was observational, un-blinded and lacked a control group, it does highlight the potential of using personalised data, alongside education, accountability, and self-reflection practices to inspire, manage and empower people in their self-management of a chronic and complex condition such as PCOS.

Of note is with the high percentage of users experiencing a greater sense of empowerment, this was despite some not receiving a physical benefit from the behaviour changes at the time of the survey. Limitations of this study include lack of clarity around accuracy of self-reporting nature of PCOS.

Further research is planned with regards to app usage, outcome alongside professional support such as dietician and GP is planned. More research is required to understand the impact of using a CGM and other personalised data alongside a holistic behaviour change app in the management of metabolic conditions such as PCOS.

Conclusion

Preliminary data from this study implies that the use of a data driven holistic lifestyle medicine app is effective in increasing a sense of personal empowerment and understanding of their bodies in women who had PCOS. With both Self-management and health literacy being keys to long term success and outcomes. The effectiveness of the application will need further validation through more research, however Apps such as these may help women with PCOS achieve lower attrition rates and implement successful interventions.

Lifestyle medicine is first-line treatment for PCOS. It is the safest and most effective long term management strategy, which has the potential to not only impact the health-span of the women, but should she go on to have children, their health and beyond.

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