Our submission into Victoria's inquiry into Women's Pain.

As an organisation committed to gender equality, Portable welcomes Victoria’s inquiry into Women’s Pain.

Our mission is to use design and technology to address areas of social need and policy failure; we note that the inquiry has highlighted inequity in the experience and treatment of women’s pain and made a commitment to improving models of care and service delivery for women and girls.

Our submission highlights some of the disconnections between women and services. They are based on our professional experience as designers of services and support solutions, and our lived experience as women living with chronic conditions, including lived experience of chronic pain. We provide examples of how service design and technology solutions might help improve experiences across five focus areas emerging from our research;

1/ Communication

2/ Health fundamentals

3/ Information management

4/ Identifying cause and effect

5/ Personalised and up-to-date care plans

The stories, examples and solutions you’ll find in this paper are intended to illustrate possible solutions and stimulate thought and conversation about how services could be improved. They are not intended as ready-to-implement solutions. We hope the inquiry is inspired by the possibility and potential these early ideas represent and highlight some ways in which design and technology based solutions could contribute to improved outcomes for women. These types of thinking could be built into the new models of care that are a key outcome for the inquiry. 

This inquiry presents a huge opportunity for Victoria to deliver radically improved experiences of care for women and girls experiencing pain. Alongside our suggested focus areas, this submission provides some suggestions about how the inquiry might develop ideas that will lead to service models that are substantially, rather than incrementally, better than the services available now. Our innovation recommendations are:

1/ Protect and promote privacy rights

2/ Integrate different perspectives 

3/ Prioritise opportunities for change

4/ Support progressive social policy change

This submission is based on: 

  • Our experience in human-centred design, technology and policy issues
  • An innovation sprint completed in January 2023 on the intersection of chronic illness and emerging technology
  • Contributions from four Portable women with lived experience of chronic pain conditions, including endometriosis, musculoskeletal pain and Still’s disease.

Five focus areas for innovation

1/ Communication

Women have to be able to explain their experience to get help and/or a diagnosis 

Before anything can be done about the pain a woman or girl is experiencing, there must be a shared understanding of the issue between a patient and a health practitioner. There are a range of different barriers that mean these conversations may not be effective and, rather than getting timely treatment, women find themselves having conversations with one person after another — trying to find someone who will listen, understand and help. At any point along this journey, a woman experiencing pain may give up and choose to put up with their pain.

From a health practitioner’s point of view, it’s difficult to provide help and/or a diagnosis to someone who doesn’t fit with an established illness or disease profile. ‘Pain’ is a non-specific and subjective symptom compared to, for example, high blood pressure. A clinician may ask a lot of questions about someone’s experience of pain and still not have enough of a picture to get a sense of what the cause may be. In reflection, an individual’s expression of pain might be down-played due to being repeatedly rejected or ignored by people around them. 

Digital and service design solutions can improve the quality of conversations between women and healthcare professionals

During our innovation sprint on chronic illness and emerging technology, we discussed the challenge for an individual to articulate their symptoms in a way that’s meaningful to a medical practitioner. 

We imagined a digital tool that prompted a person to fully describe their pain journey. This tool would be designed with both patient experience and clinical interpretations in mind so that the patient’s journey could be captured in a way that would be relevant to a reviewing clinician.  

We imagined a tool that would help a patient articulate all of the relevant aspects of their experience, including things like:

  • Types of sensation and locations of pain
  • Duration and frequency of pain episodes
  • Interventions they’ve tried 
  • Intensity of pain 
  • The evolution of their pain over time

We imagined a solution that would organise these answers and display them in a way that would help to tell the story of the patient experience. We expect this tool to make it easier for a patient to clearly explain their journey with pain and for clinicians to understand it. 

We imagined this solution could be generated as a password-protected webpage that would be owned by the patient and can be shared with health practitioners as a link or exported PDF. 

The solution could leverage artificial intelligence to recognise patterns to potentially compare against population data and:

  • help clinicians toward a diagnosis and/or next steps for a patient  
  • communicate leading and lagging indicators to better inform users, building a connection between individual experience (as per logged data) and outcomes

Beneficiaries of this solution could include:

  • Individuals suffering from pain who 
  • Do not have a ‘full picture’ of their pain journey
  • Are seeking diagnosis or management support
  • Are building their awareness and capability for self-advocacy
  • Clinicians, researchers and peak bodies looking to: 
  • build a behavioural data bank, to identify trends that can be used as evidence for awareness building campaigns or to seek funding
  • Reduce already-too-long diagnosis wait times
  • Confirm the efficacy of pain management strategies over long periods of time
  • Identify future research and development opportunities

Our hope is that the solution prioritises consumer and user needs and benefits first, so that we don’t contribute to ‘big data’ captured by many private women’s health organisations, but rather secure ‘open data’ that is fed back into a system that ultimately empowers the consumer and user community. 

2/ Health fundamentals

Baseline health plays an important role in pain recovery and resilience.

There are lots of different conditions that have chronic pain as a primary or secondary symptom. However, the fundamentals of health play an important and underappreciated role in a person’s experience of their painful condition. Healthy sleep, diet, exercise, stress and relationships can all improve a person’s health and wellbeing. 

Women should be encouraged and empowered to improve these aspects of their health. This must be done in a non-stigmatising way, recognising that people with chronic conditions have more barriers to good baseline health than the average person. 

While these statements are often known and recognised throughout our society, there remain exclusive environments that are considered unable to cater to basic health and well-being needs. Take, for example, traditional workplaces. If an organisation was to improve their equity through diversity and inclusion by creating policies and procedures that enable the organisation to balance employee health and wellbeing alongside viability, it would benefit everyone – especially women and girls experiencing chronic pain. 

If our environments support us to build awareness and pursue better health and wellbeing outcomes we can put into practice what we learn from logging our symptoms and sharing our behavioural and body data. 

Digital and service design solutions can encourage and empower women to improve their health fundamentals

Our team discussed the way that wearable technology has made it possible for people to better understand and manage their baseline health. We also observed that these types of technology are more often marketed towards — and adopted by — people who are highly invested in their health and are likely to have higher than average technology literacy and baseline health. 

We imagined a digital solution and supporting telephone service that would help people with chronic illnesses to use targeted wearable technology to improve priority aspects of their health. 

A website would allow users to identify their pain condition (if known) and select baseline health goals, the technology they use currently and their budget. The website would identify relevant wearable technology to support this condition and goals. It could also generate some advice or tips around the use of the technology. And make clear the remit of the technology; it is not intended to replace mental health, medical and social support expertise. It provides you with information to take into those realms to better understand and advocate for your needs. 

A phone service with technical and clinical experts would be available to provide troubleshooting advice about the use of the technology, interpreting results and/or developing habits.

We see a service like this as being free for people with chronic pain. Ideally, it would give people free or subsidised access to wearable technology and may include proactive engagement and follow-up from the service.

We are mindful that innovative solutions need to be carefully considered. And we are aware that society relies on larger, established services and systems such as our hospitals. However, we are curious if the previous standards we use to consider risk, need to be updated to reflect the changing landscape. Our recent work on system reforms in the mental health and disability sector led us to wonder if we need to update our assumptions about society’s appetite for change; for new uses of technology and which voices are asking for solutions that align with transformational change that adopts new and emerging technologies, and adapts them to meet their needs.

Our updated considerations include:

  • Lived and living experience led engagements: including meaningful intersectional representation at all levels of codesign engagements
  • Privacy as a human right is a primary design constraint: empowering users to enthusiastically consent to the use of their data benefiting them and/or their community and clarity on who gets to see their data, how, when and why.

3/ Information management

Women with chronic pain often work with multiple experts and have to manage a lot of information.

Chronic pain conditions don’t come with an instruction manual. While women are experts on their own experience of the condition, it’s often only over time and with conversations with community, sector and/or health professionals that they typically gain an evidence-based understanding and subjective viewpoint of their condition. 

Once a diagnosis has been made, people with chronic pain go on a learning journey. This journey is often a difficult sense-making process, where a person’s learning is sandwiched between what they can find on the internet and what they can retain from the information shared in medical appointments. 

We see a huge opportunity to support better learning journeys for people with chronic pain conditions. 

A solution that could help women better understand their condition.

We imagined a health wallet that would store the details of a person’s current and past care team, keep transcripts of conversations from consultations and present them in a scannable, easy to access format (similar to Apple Wallet).

The ability to store health information in a single place is especially valuable for:

  • people who might have many people involved in their care 
  • people who have a condition that is likely to last a long time
  • people who may have their own conditions and also be a support person for someone else
  • people who are seeking diagnosis for first, second or multiple conditions where symptoms are not always straightforward and a “full picture view” is not always possible or known by the clinical team.

A feature we saw as being particularly useful in this solution is the ability to search past records. This feature is useful because it acknowledges:

  • It can be difficult to take in medical information in the moment, especially if the person is experiencing acute symptoms or mental health challenges
  • New languages, ideas or terms and their meaning or impact may take time to learn, understand and connect with
  • Conversations or updates that are difficult to hear could be captured and stored for the person to refer back to – this is especially useful for people who experience brain fog and/or emotional distress.

We imagined a valuable extension to this solution: the ability to query the information. This feature is useful because it acknowledges:

  • Information shared verbally is often different and more accessible than what’s officially documented
  • Searching and landing on unedited transcripts or audio descriptions still requires the user to make sense of the data. 

Stepping into our shoes, when we are in pain we often seek a voice or face to simplify the system. If, for example, an AI were to synthesise audio recordings, official documents etc. and share back insights, the user can get to actionable insights quicker. This could reduce cognitive load and save valuable energy for more important tasks. 

We expect this type of solution to be met with resistance. While it’s legal for a patient to record a meeting with a doctor in Victoria (if the doctor gives consent) we expect there may be fear that verbatim records of meetings might lead to litigation. There’s also likely to be concern about Artificial Intelligence and the risk of quasi-medical advice or misinformation. 

We believe that these risks are manageable through considered design work, informed consent processes, and the right supporting policies and/or legislation. We encourage the inquiry to consider solutions that lean into the potential of new technology because the power of the internet means that users have access to this type of information technology whether or not it’s codesigned with lived experience, expertise and evidence-based communities. 

4/ Identify cause and effect

The diagnosis and management of chronic pain conditions often comes down to linking cause and effect.

The origins of a pain condition and the things that make it better or worse are often personal to an individual’s physiology, the precise causes of the pain and their broader life circumstances. This essentially means that there’s no ‘one size fits all’ approach and it’s imperative to have the individual involved in the definition and evaluation of their treatment. 

Both the definition and evaluation of treatment need a link to be drawn between the ‘cause’ of pain and the ‘effect’ of the treatment (‘made pain better’, ‘made pain worse’). While this may seem straightforward in theory, establishing these links can be very elusive in practice. The unpredictable or counter-intuitive experience of pain adds an additional element of suffering for the patient; the psychological pain of what might trigger a pain flare or escalation and/or not knowing what will bring relief. 

Once the cause-and-effect relationship is known, access to relief is more straightforward — although also not guaranteed. 

A solution that could help identify cause-and-effect relationships and next steps.

We imagined a solution that allows people experiencing pain to identify things that seem to make their pain ‘better’ or ‘worse’. It could be built to incorporate clinical instruments used to indicate different pain-based conditions but would allow patients to record their experiences as/when pain occurs and over a period of time — rather than having to summarise and generalise their experience in a meeting with a clinician. 

Many digital solutions help people to track information. For most people, the motivation to input data is highest when there is a moment of crisis and then tapers off. This solution would work with that natural motivation and build a record that can be helpful when a condition flares. 

We imagined this solution powered by AI that has been trained on and kept up to date with literature related to pain-based conditions. Through this training, the AI would be able to recognise possible patterns that could lead to diagnosis and suggest non-medical treatments that may reduce pain for the person to consider e.g. ice and heat packs. 

The conversational nature of Large Language Models (LLMs) such as ChatGPT, could present insights that take user-logged data combined with translational research – and present insights that still allow a user to augment them. For example, many existing mainstream menstrual cycle apps assume a woman may experience regular cycles. However, not all women have regular cycles. If this solution identified cyclical patterns, it could (through the use of an LLM) present information and allow the user to correct data, and therefore not assume they fit a pattern. This creates an opportunity for user agency and control. 

This kind of solution could be especially valuable if it also supported patients to navigate the health system. We imagined a chatbot that would use its understanding of likely conditions to recommend a health provider, a local clinic or a condition- specific community group.

This feature recognises that the challenges faced by women experiencing chronic pain include finding someone who can help them. In line with this, we imagine this solution providing a short list of health providers that can be filtered based on publicly available information about their specialities, where they are located, how they charge, if they provide telehealth options (where suitable) and how they’ve been reviewed by other community members. Some communities have grassroots versions of these ‘service provider maps’ such as Nancies Nook (an Endometriosis facebook group) and r/Endometriosis (a subreddit group that has a regularly updated and community-reviewed list of providers and specialities by location). 

5/ Personalised care plans

While there is a broad aspiration for ‘patient-centred care’ in the healthcare sector, there are many things that can stand in the way of this. The complexity of a person’s case; rapid, global advances in medical science and transactional relationships with patients all contribute to making it difficult for any individual medical practitioner to generate a care plan that is truly individualised to someone with chronic pain. 

Furthermore, the choices an individual makes, their lifestyle factors, values and beliefs might not align with standard treatment plans. For example, a first generation immigrant might not have a strong or extensive social network to rely on for support and they or their care team may not recognise they’re missing this support from their pain management strategies. Without a holistic understanding of an individual, the world they live in and how they interact with that world; we miss opportunities for effective and empowering care, treatment and support. 

A solution that could propose and iterate individualised care plans.

We imagined an Artificial Intelligence engine that could take simple inputs from a patient and clinician, including a diagnosis, and search reputable medical journals for relevant information about treatments. The AI would synthesise this information into a template for proposed review, firstly by the doctor and then by the patient. 

We imagine this solution providing references for its work, so clinicians can trace any unfamiliar recommendations back to the source information. This step would enable doctors to keep up to date with advances in medical science and also ensure patients are getting access to the best possible information. 

We also imagine this solution giving patients the power to respond to their treatment plans and enlist AI to help identify potential solutions. If a person has an issue with their treatment plan, they may not have to wait as long to get a resolution as AI can be tasked to bring both their issue — and some possible solutions — to the attention of the treating clinician. 

A key to the success of a solution like this is a good workflow. It’s important that AI isn’t working without appropriate human input, feedback and revision. With the right workflow, however, a solution like this can improve the efficiency and effectiveness of work done by humans.

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