Whether you know what crowdsourcing is or not, you may be surprised to hear it could be the future of medicine.
Crowdsourcing is a new part of our global culture which we’ve really seen taking off in the past few years thanks to an increase in the number of people all over the world who use the internet every day.
Instant connections to friends and strangers around the world mean we’re as likely to turn to our peers for help or advice as we are to a professional.
This has its benefits. For example, there is a wide and willing network of people out there online who are willing to give strangers the benefit of their own experience and any knowledge, help and advice they have to share.
On the downside, the information and help available is often untested and unsubstantiated, and can even be counterproductive if the wrong kind of help or advice is given. This can lead to disappointment on behalf of the crowdsourcer.
One of the most well known crowdsourced resources available online today is Wikipedia, a website which continually documents all known things in the world in a rapidly expanding database for free use by anyone at any time. The whole site is populated by countless volunteers who add information they believe to be correct and pertinent to the subject.
Crowdsourcing is also popular with entrepreneurs who wish to kickstart a project and need to raise money to do so. By seeking investment from their peers, they can directly reach their customer base and ask for help bringing the project to fruition in return for rewards.
So, this is crowdsourcing in action when it comes to matters of reference and of investment. But what about crowdsourcing for health?
This concept has been tried and tested already by a healthcare crowdsourcing platform called QuestionDoctors.com, which launched in 2015 after being developed in Montreal, Canada.
The idea behind the website and the service is to leave medical questions answered instead of unanswered, and for the sources of those answers to be medical professionals including giving users the opportunity to ask a doctor a question about a health concern to solve medical problems free of charge.
QuestionDoctors.com allows people to ask a question directly to a board certified medical doctors free of charge and at the same time to present the question to a general group of medical professionals and people – referred to as medical consultants- through its crowdsourcing platform. This allows for a maximum exposure of the medical issue and a better response time.
Users simply submit their medical problem or issue to the website and it is looked at by a pool of professionals. To date the site has dealt with thousands of cases.
Users can have the option of getting medical help free if they wish but in most cases are encouraged to pay at least a token amount from one of several different tiered payment options.
The result of this is that medical care is available very quickly and conveniently, and also at a lower cost than it would otherwise be. The site is now used in 29 countries around the world, in several languages and is able to supply and analyze medical data because of the large amount of data it has access to.
QuestionDoctors.com states it does not replace the doctor/patient relation nor does it provide treatment or recommendations that patients should follow without consulting with their Personal Doctor first.
Investors started the business off with $1.4 million because they could clearly see the potential in this project. The patients like to have cheaper and faster diagnosis as well as having something in writing rather than having to go to the doctor’s and potentially leave without having fully absorbed the information given to them. Of course it also applies that users like to save money, especially in countries where there is no universal health care for all citizens.
The data collected by the users who submit their cases to the site is anonymized but may include all the relevant information that a doctor might need to be able to provide a diagnosis. This also helps to alleviate any issues with patients being embarrassed.
The site also allows patients to receive information from other patients who have experienced the same issues. Thus removing the isolation and some of the fear and anxiety patients experience.
Among the medical consultants who can use this data to then help people include medical students, retired health professionals, ex patients, knowledgeable individuals and anyone else with an interest and knowledge of medicine who is appropriate to study the information accurately.
Using all this data, these medical consultants can then give their opinions, which are presented to the patients in the form of the most likely causes of their concern. With this information, patients can go to their doctor already armed with the preparatory work that can save the doctor time in diagnosing any problems. From there it will be a case of the doctor simply confirming one of these diagnoses or, in some rarer instances, suggesting a completely different diagnosis. In such unlikely cases as this latter one, the doctor will have had the benefit at least of having some options to consider before deciding what they believe the real issue to be.
As well as medical professionals and aspiring medical professionals, there are also current and former patients available to study the cases presented to them through the site. This is a new and unusual development in terms of giving medical advice, and does have the potential to present the users with inaccurate or misleading information. However, tempering this with the informed medical opinions of all the experts on the site means the patients are much more likely to get accurate information than they would if they were looking to their peers alone for a diagnosis.
In addition, there may be descriptions of symptoms which will more likely be recognized by other people who have suffered from the same conditions themselves. For example, if a patient submits a case to the site and outlines very well how a certain symptom feels to them, it may be that only someone who has experienced that very same feeling can immediately come to a conclusion about what the problem could be.
This is where the idea of medical crowdsourcing really comes into its own as a new way of doing things and of providing medical care.
All the conclusions given by the people who have responded to the patient can be assessed by other medical consultants as well as the team at the website, and the information is passed on to the patient. Users can determine the quality of the information they receive based on several factors, but among them are the reliability of the information giver, for example looking at what information they have previously given and how valuable it has been estimated to be.
The patient may decide to thank the medical consultants who have helped them by giving them a financial reward. This provides incentive for the medical consultants to ensure they provide only information which they believe to be true. It also means that any of the medical professionals who help to solve the case are given some added cash to spend, which will always be very helpful in what is a very expensive subject to train in. Students particularly can benefit from this and it may even be useful to help them to pay their way through medical school as well as giving them experience and some pride in the part time work they are doing because it’s helping patients even before they have fully qualified to do this as a career.
In countries where healthcare is not free, patients who can benefit from this medical crowdsourcing can include those who would otherwise run up large bills simply to try to have a problem diagnosed. QuestionDoctors.com has reported that many of the patients they have helped have seen on average 5 separate doctors over six years. In some cases, these same patients may already have incurred important medical expenses and this may already be something they could not afford, so a service like this offers a way to get the help they so badly need without the further stress of running up even more costly medical bills. Stress can also be a factor in prolonging or worsening illness so by providing a service like this it may help to take some of the stress away from the situations these particular patients are in.
Other cases in which this site can really be seen as almost better than going straight to a doctor are in cases where a condition is so rare that one doctor alone may not diagnose it, and a patient may otherwise go for years and see many different people before they are finally correctly diagnosed.
QuestionDoctors.com are keen to point out that patients should never use the site if they are experiencing a medical emergency and should do as they would always normally do and call the emergency services. Although the site is fast compared with making a doctor’s appointment and going on from there, it is not at all fast enough to replace emergency services nor is it reliable enough to help in such situations, and that is not the site’s aim.
The site is also not to be used as a source of advice for treatment, and should be regarded as a place for initial or second opinions and alternate diagnosis only, with a doctor being required for any treatment plans and also to confirm or otherwise negate the diagnosis that has been given.
Despite these restrictions, the site reports that over seventy percent of the people who have used it have found it helpful, and have also said that it has formed a part of their road to a full diagnosis and then a treatment, once they had sought further advice from their doctor.
QuestionDoctors.com has had its own share of criticism on top of all of this praise from patients. There is a general skepticism of this kind of crowdsourcing when it comes to medicine, as many people feel uneasy with the idea of personal health being crowdsourced to unqualified and anonymous people when it is such an important and potentially fragile thing. Those particular critics believe that medical information and diagnoses should never be crowdsourced, and that there are potential abuses of this trusting and anonymous relationship that can occur too easily without proper regulation. There are also some concerns over the fact that even treatment can be crowdsourced through the site, and that there may be advice given to patients by unqualified people – either on purpose or by accident – which will not help the patient if they follow it, and in fact may lead to further problems including a serious danger to health. However these criticisms are unfounded.
Medicine and health is not the monopoly of one group of people. There are different visions and approaches to medicine in the world, each with its contributions to make. Medical crowdsourcing allows for these different and alternative solutions and can ultimately lower health costs where costs are prohibitive and benefit patients throughout the world where medical services are rare and difficult to obtain.
QuestionDoctors.com is clear that there should always be a consultation with a doctor involved, but of course it has no authority over its users to ensure that they do then go to see their doctor, and in fact they may never know whether users are then going to go on and see a doctor at all.
Another excellent example of medical crowdsourcing is Crowdmed. Similar to QuestionDoctors.com, Crowdmed seems to address itself more to diagnose difficult problems and uses a concept of medical detectives to respond to medical issues. It has been criticized by such people as bioethicists who have expressed their fears at their what they feel is a lack of privacy for the patients with regard to their records once they have submitted their information. They have also questioned the accuracy of the diagnoses provided by the people on the site. There are also some medical regulatory experts who have expressed their concerns at the site because they suggest that it may be what they have called an unauthorized practice of medicine. Crowdmed is also an answer for those who seek solutions to their health problems through a crowdsourcing environment.
Another player in the medical crowdsourcing field is another website called Healthmap.
The idea behind HealthMap is that it can monitor any disease outbreak or emerging health issues which can spread from person to person, and it can do this with an interactive map that can be updated in real time by members of the public or medical professionals who wish to alert others so that the areas can be avoided and any diseases can be contained instead of being spread to more and more people.
The HealthMap idea was put together by a team of software developers along with researchers and epidemiologists at Boston Children’s Hospital. It’s a free website and also has an associated mobile app called Outbreaks Near Me. Both of these provide information that is related to any outbreaks or health-related issues that are location specific. The kinds of people who might use this information can vary from local individuals to international travelers who may be planning on visiting an area, but also such public spaces as libraries, schools, local health departments, hospitals and clinics, and all the way up to governments.
Among the sources that HealthMap uses to gather its information are eyewitness sources from individuals, news sites and aggregator sites, official reports and alerts, and expert advice. These sources together can provide mapped data in real time which is useful to anyone wanting to quickly see the status of an area or follow an outbreak. This is equally relevant whether it is for human safety or the safety or animals, as some diseases which are infectious to both humans and animals are more serious in one than in the other if transmitted, and can be spread between the two.
The processes the site uses are automated and the site works by filtering through all of these sources and turning it into visual data. The filtering process is constant and is always in real time. The site monitors all the data that comes in before filtering it, organizing it into different categories, integrating the different kinds of data together, turning it into a visual representation, and then broadcasting it to the app and the site in nine languages so that anyone using either the app or the site can immediately see and understand the information. This is an excellent tool in the fight against infectious diseases and public health threats, and can only be achieved with a sizeable amount of accurate data.
Sickweather is yet another automated map-related health tool which helps people to monitor and avoid certain areas or to learn what kinds of health problems are occurring and where.
The way SickWeather works is also crowdsourcing, but in a less obvious way because the people it is crowdsourcing from are unaware that they are contributing to the service.
SickWeather monitors social media and picks up mentions of anything that appears to be social media users reporting news of ill health. The site and app pick up on certain words and phrases, and the location from which they were posted.
People who have the app can then see this information displayed as a map in real time, as the data is organized and filtered to remove any irrelevant mentions and also to group reports together to show any particular geographical patterns.
It is also possible for users who have the app to make a deliberate report of ill health so that the app can include this in the information it gives to other users, and this way the users of the app are all able to inform one another about any health issues that may be related to the spread of infections and suchlike.
Another source of medical crowdsourcing is a website called PatientsLikeMe. This is a website which is slightly different to QuestionDoctors.com and CrowdMed and in one specific way. That is that all of the people who visit this particular site are already patients who have been diagnosed with their condition, whatever that condition may be.
The patients who use the site do so to connect with other people who are also experiencing the same condition themselves. The aim is to share experiences and knowledge in real time, by providing such information about their conditions such as treatment history, side effects, hospitalizations, symptoms, disease-specific functional scores, weight, mood, quality of life and so on. This information is not added to the site once but rather is an ongoing source of data that is inputted by the users. The result is that a record can be created for that patient which allows not only that particular patient, but also others like them, to get some insight into their progress and to learn what they can do to help their condition. It also allows them the ability to work out what to expect in the future, bearing in mind the milestones they may be reaching and what other patients have experienced beyond those particular milestones.
The data is available to patients as visual information, in the form of things such as charts and graphs, which can immediately show any relevant patterns on first sight that may not be visible or measurable on a day to day basis or through written information alone.
The idea here is to ensure that patients are able work out what action they can take, and what results they can expect from those actions when they take them, either immediately or further down the line. Although it can help when a doctor gives this information to a patient, it is often more helpful and easier to understand and take in if the information comes in the form of the experiences and data of another patient in a similar situation. It can also show patients in an easy to understand form exactly what the progress and success rate is or has been for other patients when choosing one form of treatment over another. This can enable the patient to make a very well informed decision about what kind of treatment to choose if they do have a choice, therefore giving them the maximum possible amount of information from the best and most reliable number of sources when combined with the official advice from their doctor too.
It is also possible for all patients who used the site to see some general daily health markers, regardless of their condition, so they can search for patterns that may provide some insight into their overall health, as well as enabling them to keep track of periods of bad and good health. This means they are more able to stick to good and healthy habits where they have a choice, as they can see the data for themselves and can also share this data with others to inspire or warn them.
The information is presented in different forms to suit the type of condition a particular patient is being affected by. So for example sufferers of amyotrophic lateral sclerosis can see their information in the form of a percentile curve which tracks their progress and its speed alongside others who are of the same status as they are. This enable the patient to know whether what they are experiencing is a slow, normal or more rapid progression of their condition and its associated symptoms than most other patients in their particular bracket.
If the patient has epilepsy and has seizures, the information they may find useful and are able to track are things that may be potential triggers for their seizures. This could be anything from missed medication to certain moods or things they have ingested such as drugs or alcohol, or any other lifestyle choices that could have an effect on the frequency, timing and severity of their seizures. When presented with a mood map’ visualization of their moods and the associated data, it is often much easier to be able to tell whether there are patterns to be learned from and exactly what they are.
Users of the site have reported much improved health and well being outcomes, and studies have also supported this conclusion. These studies showed that 72% of people who used the site for various conditions had found it very helpful for learning more about their symptoms. They also reported that 57% of the people surveyed had found it helpful when looking into the possible side effects of certain treatments for their condition. 42% of these patients reported that they had found it easy and helpful to find a patient who was similar to them, and that this was a good thing for them to have access to.
Patients who suffered from epilepsy in particular found the site and its data – both their own and that of other patients like them – very helpful in gaining a better insight and understanding of their symptoms, seizures and the treatments that were available to them.
The more connections on the site that each patient had, the greater it seems are the benefits they experience from using the site. Although this could be put down to the data they were able to receive from these connections, there is also a great deal of value in the social and personal connection and support associated with these connections. This is just another example of how medical crowdsourcing can help by providing friendship and human interaction through ill health, but this type of value is more difficult to measure than any purely medical or scientific data. This is particularly valuable to those who may have such debilitating health problems that their social lives are extremely impaired or even nonexistent, as it provides a network of people who are in a similar position and can therefore perfectly understand the problems faced by other sufferers of the same conditions. This kind of understanding can alleviate loneliness and isolation, as well as some of the worry and stress associated with feeling alone in having a condition that nobody in the immediate vicinity or social circle can ever understand if they do not also suffer from it.
In addition, the site can provide other social benefits too. Having access to such a resource when certain people have long term health problems means they may be able to cope better without also having constant access to medical professionals. Medical professionals and their resources and time are too stretched to give each patient the care and attention they may feel they need. In many cases this care and attention will appear to be of a medical kind but can in fact be more social or comforting than it is of any practical benefit.
In these cases, the patient can easily have access to their own data and that of others, as well as having a ready network of other patients like them to speak with. This alleviates some of the strain on medical professionals when it comes to simple cases of reassurance. Of course in the case of any medical emergency a medical professional should always be consulted, but in some cases this is not appropriate and instead the patient can reach out to someone who understands what they are experiencing and is experiencing the same thing – or has experienced it in the past.
In this way such websites are of great benefit to the medical profession as it separates the social side of their care from the professional, and means they are able to save time and help even more people with the things that only expert advice and intervention can help with.
On a much larger and more overarching scale, there is a huge project known as the Global Public Health Intelligence Network, which is an initiative set up between the Canadian government and the World Health Organization. The Global Public Health Intelligence Network is a kind of medical crowdsourcing initiative in that it is a program with an algorithm which monitors such things as online news reports, and turns this into data which can be used effectively by the government to monitor and spot any trends in infectious diseases. This project has now also begun to monitor social media as well, so that the whole world is unknowingly assisting in this medical crowdsourcing project designed to keep as many people as possible safe from harm in the event of any outbreaks such as the Severe Acute Respiratory Syndrome outbreak, during which the system was extremely useful. There is some human intervention in the case of the data gathered by the Global Public Health Intelligence Network, as it requires the sources to be translated, and it also requires that an alert be raised in case of any threat to public health. This kind of judgment is something that can only be done by a trained professional team.
In conclusion, medical crowdsourcing is a growing field and one that is proving to have many benefits for patients and the medical professional alike. However, it is best combined with professional input on a one-to-one basis for it to be truly reliable and successful.
It does, however, add something to the life of the patient that the medical professional alone cannot add, and should therefore be embraced by doctors and other experts in the field.