Fourproject.org Survey for Thyroid Patients

Fourproject.org Survey for Thyroid Patients

Thyroid UK has been contacted by the creators of a new project called four. Four is a new AI (artificial intelligence) healthcare assistant focused on autoimmune and neurodegenerative conditions (thyroid impairments, rheumatoid arthritis etc.).

The creators of four are researchers whose aim is to provide personalised information about lab values, ranges, optimal dosing and treatment suggestions for thyroid patients.

To enable them to collect the data they need they are running a survey for thyroid patients. They want to know how people live with thyroid disease including age, weight, diet, drugs used, dosages, test results and ranges.

The data collected in the survey is anonymous and after the survey ends the results will be available for all the people participating in the survey.

They have a target of 1000 people so let’s help them reach their target and provide the data they need for further research!

For more information and to do the survey go to: tinyurl.com/gmkzqdo

You can read more about them on their website: fourproject.org/ and on their Facebook page: facebook.com/fourproject4/

33 Replies

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  • This could cause difficulties unless they recognise basic differences and outcomes whether patients are taking T4 only, T4/T3 combination or T3 only. Also there's a danger of producing yet another shoehorn of ranges with sharp goalposts, losing sight of the individual patient's responses and set points. TUK needs to be active in commenting on the way they present their data at the end of the project.I get more and more concerned about the confusion for diagnosis between statistical population determinations and the unique place of the individual within these.

  • You are spot-on as usual Diogenes. They do not treat the patients but the result of the tests. We are not like cars which can be linked up to a machine and the results printed out of what the solution can be/should be. Some of us get well on one type of thyroid hormone and others have to take alternatives.

  • Failing to see the point of this, seems to be another pointless tick box exercise. Who are these researchers? Who's behind this survey? Who's funding it? Who will have access to the completed surveys?

    I'm oot.

  • I agree. It has a whiff about it of Prescqipp and their Drop List who decided that T3 was no longer needed. Being a dyed-in-the-wool cynic, I'm convinced this will come back to bite us somehow.

    I live in terror of the day that endos get NDT and T3 banned.

  • I think we have enough artificial intelligence within the endocrine world already, without adding to it.

    We are original entities, not clones.

  • Does anyone else have a problem with the fourproject website? The font is such a pale grey I can hardly read it!

  • I looked at it but it seems to be about developing a useless smartphone app. I don't own a smartphone, I never will!

    I am not a number, I am unique and don't conform to any of the "ranges".

  • Me too.

  • It occurs to me that the people who are likely to respond to this survey are the people who have problems with the current treatment - diagnosis, treatment methods and doses. The people who can't get a diagnosis because their TSH doesn't rise enough won't be included. The people who do well on the standard treatment won't be included because they are unlikely to even look for info on this kind of stuff online.

    So, their app will be based on the experiences of a bunch of unhappy patients. What good will that do? It sounds as if it will just recommend treatment of a type and a dose which keeps us ill.

  • Hi everyone!

    Hopefully this comment will alleviate some of your concerns. I am aware of the fact that the patient community is worn out of many surveys and solutions that failed. I empathize with all of you - I myself was diagnosed with hypothyroidism in December 2015. Additionally, I am not claiming to have created a new universal solution that would make you "a number". No human being is just a number. :)

    A link to my LinkedIn profile is given below. I've done research at ETH Zurich, NUS Singapore and Memorial Sloan in NYC and am currently preparing to commence my graduate studies. I'm 25. The research project is my personal initiative, it just started 2 weeks ago. Research funding is planned to be acquired in later stages.

    Both people who are unhappy with their treatments and those who have been on the same medication for years, and are fine, have filled out the survey. People stated whether or not they're taking T4, T3/T4 combination or T3 alone in the survey. None of the treatments is favoured.

    Before creating any kind of app which could recommend any kind of treatment - at least several research studies which will take at least a couple of years need to happen + of course, relevant approvals from the medical authorities need to be granted.

    The results of the survey will be available on our website after we hit 1,000 people. @diogenes - we would greatly appreciate your advice and feedback and would love to send you the results before putting them on the website. We received nearly 400 survey answers in just around 2 weeks - which is very exciting!

    I am happy to hear all suggestions, comments and advice - everything constructive is more than welcome. I am also very thankful for all the comments stated here, I'll take them into consideration. Additionally, thank you Thyroid UK for creating this post, your support is greatly appreciated. :)

    LinkedIn: linkedin.com/in/antonijaburcul

  • I think the biggest flaw in your survey is that you're asking for people's opinions without quantifying the data. "Both people who are unhappy with their treatments and those who have been on the same medication for years, and are fine, have filled out the survey." How does someone determine if they're truly "fine"? That's a subjective word. Ideally, everyone who fills out the survey should have a physical, with things like height, weight, BP, heart rate, body temperature, cholesterol, blood sugar, SHBG, other medications, etc. noted. An objective assessment of hair, skin, fingernails, eyes, and reflexes done by a third person would also be helpful. I would especially want some cognitive tests done. I'm betting that a lot of people who say they're "fine" have blood tests or physical signs that say they're not.

    Can I ask what medication you take?

  • Thank you for your comment!

    The survey asks for people's weight, height, other medications, hormone levels, current dosage, change of dosage, previous medications, other conditions, medications for other conditions, side effects experienced, diet, change of diet, age, age when diagnosed etc.

    It also asks for people's opinions on how they experienced the symptoms, because as stated in one of the comments, it should be taken into account that people are not just a sum of their quantifiable parameters.

    There's also a section with "additional comments" where people can add their opinions on the survey or whatever else they want to add as a comment.

    This survey is just an initial step. It is simplified in many ways. I hope to include all the tests you mentioned above in the design of the future research studies (therefore, thank you for listing them :).

  • Can I ask what medication you take?

  • I would appreciate if I wasn't asked to disclose my private medical data in public. There's an option on the forum to privately message all the members.

  • It is a little TOO simplified. What about people who have had a thyroidectomy or RAI ablation for cancer or Graves' disease? There is no option there.

  • Thyroid UK itself produced a very good survey with a lot of respondents for the Scottish Parliament's listening exercise. The trouble is that it was received by the medical thyroid establishment with disdainful rejection. Not that the basis of the rejection was sound: the attitude was that unless they did it themselves, it was by definition biased and unacceptable as a serious study because of that. I'm concerned the same will happen to this idea - it's findings will be bound to be distorted because the majority of people happy on T4 only won't be so willing to respond as those who are not or who are on other therapies.

  • I think people are treating the survey as though the results of it will definitively lead to the App recommendations. It won't. The survey is to gather ideas about the main issues facing patients right now. There is still a tonne of work to be done before the app is developed and they have to do this basic research first.

    If you can't spare five minutes to fill it out, fine. But a little more positivity to people who are aiming to provide something FREE to patients wouldn't go amiss.

  • I have read the 40 questions and it will take nearer 50 minutes to complete, not 5.

    There are many ill thyroid patients who support this forum and positivity is in abundance here.

    Nothing is free, except the wonderful support that we all receive from each other.

  • God you are utterly without joy.

  • What a horrible thing to say to someone who raised valid points. I decided to give the survey a go but fell at practically the first hurdle, when it would have taken me far too long to explain why I didn't fit with the premise of a question.

    All surveys of this nature are too simplified, leading me to wonder if conclusions drawn will also miss vital information.

  • FAO lorrainecleaver

    Your reply lacks grace and sensitivity, and is rather self-demeaning from such a stalwart member of Thyroid UK.

    EM

  • Please, forgive my questions, but I am highly sceptical if there is any possibility of Big Pharma being involved.

    I have read many articles, and books, on the involvement of Big Pharma within the medical arena, i.e. Dr. Peter Gøtzsche and Marcia Angell, M.D.

    I note that you are a Novartis-ETH Zurich Excellence Scholar.

    As Novartis is a global healthcare company, please may I ask what status does Novaris have in this survey.

    Will Novartis be providing the ‘Research funding is planned to be acquired in later stages’.

  • No status and no funding.

    I received the scholarship in the time period 2012-2014 for my MSc studies.

  • Thank you for your 'Like', and, I am most grateful for your prompt response.

  • No problem. :) I'm here to answer all the questions you might have. And you have the right to raise these questions.

  • Forgive me, but I did a little research on the term ‘A.I. (artificial intelligence) system’

    I discovered

    • OPINION: Artificial Intelligence in Healthcare MUST Be Used To Replace People and Jobs,

    • How Artificial Intelligence will Revolutionize Healthcare

    A chilling quote:- Healthcare is not only about business and profit,-----

    Until fraud, corruption and dishonesty are removed from within the medical arena and Big Pharma, A.I. (artificial intelligence) systems will just be vast $billion ventures.

    I don't think A.I. systems will highlight the fraudulent data in health research, provide thyroid patients with the drugs they need and change the Dickensian attitudes of endocrinologists.

  • I understand your frustration.

    AI in healthcare is far away from replacing people and jobs, most of it is still in the research phase and a lot of studies and approvals need to happen for the algorithms to enter clinical practice. I agree, healthcare is not only about business and profit, it is and should be primarily about people and their health and wellbeing.

    I don't think that either. I do think however that with more research studies and better data we can make progress. Even if we end up making a very small step in the right direction - it will be worth it. :)

  • Given that there are millions of solutions in thyroid treatment, because of a) the degree of thyroid loss, b) whether this is still changing, c) your initial set point for FT4, FT3 and TSH when well, d) how you respond to T4, or T4/T3 combination or T3 alone, e) how long you were ill before beginning or getting adequate treatment (epigenetic changes that are irreversible and have changed you permanently), f) how old you are, g) your weight, h) whether you are a smoker or not, g) have you an accompanying serious non thyroidal illness, with all these permutations and combinations, what would be the point of an app that could not give anything but vague information. For my part, I ask what is going to be the use of the proposal? Who is going to access it and what will they find out of value to them? It seems to have only a similar thrust to the TUK survey which pointed up the dissatisfaction of patients on their present therapy and asked for a more satisfactory practical response from the authorities for future diagnosis and treatment. More than that I cannot envisage and cannot see what pressure this will put. I don't think the app can be useful merely as a protest vote.

  • Answers are geared to simple conditions, eg how can I say I was diagnosed, when I had my thyroid removed? I did not need a diagnosis! Plus, I was hyper and then hypo. It is too rigid.

  • Hi!

    Thank you for your comment. :) As stated before, I acknowledge that the survey is very simple. Under the "conditions" question, people who fill out the survey can list (and they have done it so far) if they have (had) a combination of conditions, or have undergone surgery as you have (I'm sorry to hear that!). The survey is just an imperfect first step. :)

  • It would appear from your statement, "The survey is just an imperfect first step", that Thyroid UK forum, in reality, is being used as an experimental vehicle, as part of the process of " basic research" for the development of an app, with the implication, that forum members are being used as mere ‘guinea pigs’.

  • I was very disappointed at the lack of information on the website. Nothing about who is behind the project.

  • For me the real problem is the lack of defined purpose in this project. It isn't good enough simply to say "let's collect a lot of data and see what happens". In any project you should first set out what you want to do and hope to achieve before you start. Of course when the facts come out, some of your aims won't be fulfilled, but having devised an overall plan, you can then modify according to the circumstances and raise new questions to answer. But it's always first necessary to devise a plan with defined aims and then see how it pans out and also be flexible. Coming back to the TUK survey, it had a predetermined aim which I thought it fulfilled admirably even if the powers-that-be refused to be convinced..

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