FAQ
What is different about what you do?
Can you diagnose me?
Shouldn’t this service be free?
What are you doing for people affected by COVID-19 and 'long Covid'?
Why do you offer One-to-one support?
Aren't you just another self-screening tool or symptom tracker?
What do doctors and medical people get from this?
Are you an app?
I'm doing OK, so why bother?
Why so many questions?
Help!!
What do you mean by ‘inclusive’?
Why are you doing this?
What is different about what you do?
We are a new service that is built around a health questionnaire of 200 easy to answer questions that are focussed around rare and complex conditions.
Your responses are used to create reports that help you to better understand and keep track of their health and well-being.
In the near future, our service will be delivered via a platform that makes the service highly visual. One option looks like retro gaming! And we also plan to offer the service via voice and online chat.
With your consent, we use what you tell us to improve our services, and to create data and insights that advance medical and clinical research for everyone.
We also provide extra support for using the questionnaire and having health concerns heard.
We are Neurodiversity Affirming and Trauma Informed, and set high standards for Accessibility, Diversity and Inclusion.
Have you seen our 'How it works' page?
Can you diagnose me?
No, we can't diagnose you, but our health 'check-in' and Health Story reports can really help with identifying health issues needing attention or further investigation.
Our Health Story reports are visually appealing and easy to understand, aiding both doctors and individuals in recognizing symptom patterns.
Diagnosis is left to healthcare professionals, who may suggest tests, treatments, lifestyle adjustments, or specialist referrals.
In the near future, we will be adding a user-friendly health 'dashboard' with charts showing symptom relationships and changes over time, and developing more tools to guide people through their health journey more effectively.
We do intend to evolve into a diagnostic service once we have refined and medically proved our picture of how symptoms, conditions and disabilities relate to each other.
If you don't have a formal diagnosis yet, or are confident that you know your health conditions, that's fine! We suggest you use Heath Heard to take a deeper look at what you are experiencing, and expore futher options.
Shouldn’t this service be free?
We charge a low monthy fee or session fee so that we can deliver a quality service and grow and serve you better over time.
What you pay us enables:
- testing for usability and reliability
- improvements and service enhancement.
- data rights, privacy and safety measures
- accessibility and usability features..
- the long-term availability of the service
We are also developing a more visual version of the service - one option looks like retro gaming! And we also plan to offer the service via voice and online chat very soon.
With your consent, we use what you tell us to improve our services, and to publish research that benefits everyone. What we learn will be used to advance medical and clinical research too.
We would like there to be ways for you to use the service for free in the future. We’re here to listen and to help you #GetYourHealthHeard
Have you seen our 'How it works' page?
What are you doing for people affected by COVID-19 and 'long Covid'?
Complications of COVID-19 exposure are severe and challenging to diagnose and treat. Like other post-viral syndromes, many 'Long COVID' symptoms appear to be autoimmune or autonomic - the exact health issues we aim to address.
While there's no one clear route for diagnosing or treating the full range of these conditions yet, we're confident our approach can aid in identifying, reporting, and sharing such concerns.
Why do you offer One-to-one support?
We offer everyone support. We all need a hand when things are difficult, and being unwell can make keeping track of things so much harder. We may also need help because:
- Health issues or disabilities can affect our ability to focus or communicate
- It's challenging to prioritize our health, especially if we're not used to it.
- Many health services are biased and make unhelpful assumptions about us
- Long-standing issues are often overlooked as they are normalised
- Doctors expect us to speak up about our health, even if it's difficult for us
- Many of us have felt unheard or doubted by doctors
- we need support to speak up confidently and to rebuild our trust.
Find out more about the one-to-one support we offer here.
Aren't you just another self-screening tool or symptom tracker?
No, we're a full service built around a symptom framework, that helps everyone to uncover the kinds of issues with physical, cognitive, and social functioning that are often overlooked
You can use the service as a symptom tracker, or for a one off self-screening, however Health Heard is so much more - it's a whole new approach.
We have designed the service to be as helpful and supportive as possible, prompting you as you go along, but also giving you space to record what you like. It's up to you how you use it. And we're here to listen to what you say too.
What do doctors and medical people get from this?
We help those who assess or diagnose health problems or needs by providing in-depth information in a readily accessible form. This also makes signposting and condition management easier, especially as the records build over time.
We're here to simplify health info, aiding in diagnoses and ongoing care. By providing accessible records, we ease the workload for healthcare professionals and ensure better support for the tens of millions worldwide facing complex health issues.
Our service can help track how conditions progress and also evaluates treatment effectiveness. This helps ensure timely access to care for everyone and promotes long-term savings in healthcare costs.
Additionally, we're pioneering standardized "patient-reported outcome" measures, enabling individuals to report their health status over time, rather than just post-hospital visits. This advancement empowers informed decision-making for improved health outcomes.
Through our efforts, we aim to revolutionize healthcare delivery, making it more personalized, efficient, and inclusive for all.
Are you an app?
Not yet. For now, we are providing our services though this website, which is designed to be just as easy to use for those using desktop computers, mobile phones or tablet devices.
It makes us easier to be a 'point of care' device, and reach more people, as you don't need the latest phone to use it.
Our future plans include chatbots and messaging, voice activated systems, and apps.
I'm doing OK, so why bother?
Everyone benefits from taking a closer look at their health.
We've started by helping people with the Ehlers Danlos Syndromes or Hypermobility syndromes, or heritable connective tissue disorders such as Marfan's Syndrome, because they have been particularly poorly understood by the medical profession. Through research and our collective experiences, we have got to know how these symptoms may present, and to recognise many of the early signs of problems becoming severe.
These signs and symptoms are also the 'missing measures' that we all need to look at once in while to keep close track of our day-to-day health. It's really useful to begin to use a service like ours when you are well, so that you can spot changes early, and in time to take precautions, to take action.
It could also be that even though you are generally well, you may have mild symptoms like allergies or skin complaints or find that you are more tired than expected. We can help you work out if this is just a one-off concern, the effects of stress, or the signs of something more systemic, more complex, that could be more serious over time.
If you've ever been told that your health issues are 'all in your head' - when you know that they are not - we can help too. It is true that steps to reduce stress might make a difference and if you are taking these measures, then you can use our service to track progress.
But if your health issues are, or become, more severe, or if those steps just don't work, then the information we help you gather can be used to demonstrate this, and get your concerns properly paid attention to - and fast.
Why so many questions?
"Explaining our health worries can be hard, especially if you are not sure what is important, or you have a lot to say in a short appointment. It's even harder if you have trouble communicating, or if what you say is not being taken seriously, or is at risk of being ignored altogether. Not being believed is hard on us, and harms our health too."
Health Heard's 200+ questions cover many of the issues typically faced by those of us with complex health problems, and uses everyday language and terms that you and your doctor can both understand.
We have to ask this many questions, to make sure nothing is left out! To make this easier the questions are structured and follow a pattern that's easy to get used to over time. You can also fill out the questionnaire over time, and save as you go. And our guidance and support are helpful too.
Best of all, our Health Story reports help you see what is bothering you most - and what's just fine.
Help, I'm stuck!!
What if you or the person helping you get stuck or are not sure what to do or say?
Just ask. We're here to guide you through all aspects of using the service.
And if you need extra support, we can help.
What do you mean by ‘inclusive’?
Many of us who live with chronic health problems and hidden disabilities struggle to identify and express our health concerns and needs effectively, preventing us from getting the care we need, when we need it.
This is distressing, and over time can affect our well-being as much as our physical health.
Health Heard prompts you to give information in language that is simple, yet helpful, and that provides clear measures that you can compare over time.
Our reports are designed to be easy to understand so that you and your doctors can see and discuss what is going on much more easily.
Being inclusive is making sure that we leave no one and no health issue behind. We do this in the following ways:
Our symptom framework uses existing medical models but looking at symptoms independently of them and even considering issues that aren't normally considered to be medical
Our accessible approach helps us to make sure that as many people as possible can use the service and have the tools and support they need to get the most from it.
Our data and privacy policy gives you has the means to contribute your data and experiences if you wish, while respecting your rights.
We support health data inclusion by gathering 'structured' and 'open' responses, and by not discarding or dismissing data just because it does not fit into current medical models or practices
Rather than relying on existing data and models which may be biased or flawed we will be checking our data against what really matters, which is what people actually experience.
Our research strategy begins with learning from you, through surveys, workshops and your feedback. In the future we will be using AI and machine learning to building new models and use them to ask new questions that will give us an even richer picture of what is going on for people, and to uncover the questions that we don't even know to ask yet!
Why are you doing this?
Public hospitals and private healthcare companies alike are struggling to meet the needs of people with complex health issues. These include autoimmune and autonomic disorders and disability related conditions, and the effects of long termstress.
Without timely treatment, symptoms become chronic and even more costly and difficult to manage. Reporting symptoms properly is key - yet many people struggle to do this - for all sorts of reasons, including the impacts of the conditions themselves.
Ehlers Danlos Syndrome (EDS) and related Hypermobility disorders affect up to 70,000 people in the UK, and hundreds of thousands more around the world. These conditions affect sporty, creative and high achieving people more than the general population so symptoms and markers may be ascribed to stress, overwork or accidental injury rather than to any underlying physiological cause, blocking timely diagnosis.
What if more people than expected have impairments and complex health problems that are not being fully recognised? And what if theses symptoms are actually a syndrome or condition that is under diagnosed, or yet to be discovered? What do we do?
Innovating from the experience of the founder and through extensive research, we have developed a symptom framework and related tools that will support those with EDS and related disorders in getting the help they need, even if they do not yet have a clear diagnosis.
This framework will also help those who are yet to have a diagnosis, or those who want to explore their health and track their wellness in a deeper more meaningful way.
This is not only critical for individuals, and health providers, but also for organisations that need to observe and monitor the health of their employees, and watch for signs of stress, and burnout, or the early signs of exposure to hazardous substances or pathogens.
We urgently need to help people recognise, track and report their symptoms and experiences - more effectively, especially if they have difficulty understanding or using devices, or forms. Overcoming these barriers is critical for everyone. The cost of inaction is huge, not just in public health and welfare costs, but also in lost working hours and missed potential.
Improving access to healthcare and preventative services is also key to meeting Sustainable Development Goal 3 : Good health and well-being for all. Let's give everyone better and more effective ways to report their symptoms, and encourage and support everyone to look at human health and well-being from a more integrative, systemic perspective.