5. Reasons for the Online Survey Strategy – and Survey Platform
It was decided to have an anonymous online survey, anonymous to not violate privacy or stigmatize and online so it was very convenient to the respondent.
Here are the goals of the survey strategy.
A . Benefit to Researchers
-help researchers see patterns that individuals alone cannot see
-help researchers know day to day details of how this illness works
– provide information not available in a doctor’s office. Researchers in a clinical setting cannot test how dystonia affects brushing teeth, eating, golfing. They could use our personal reports
-save researchers time in their study. A research study usually has a short time limit and it is difficult to trace progress of patients over extended periods. A one year survey could give patients time to delve deeply into their situation, spaced out conveniently.
-give patients time to collect data. In a clinical setting a patient may not immediately recall if he had measles at age 6 or if his grandfather had facial tics but a study done in our own home gives patients a chance to think about answers
-use computers to help collect the data
B. Benefit to Patients:
– help patients feel understood and heard
– raise the profile of the condition
– help patients see patterns of the condition to make it less intimidating
– help patients think about causes
– help patients think about family patterns and give researchers input about possible causes
-help patients see ways others cope that may be useful
-help patients feel they have input into research and feel useful in finding a cure
Natural history studies of patient experience are becoming more common. They give long term trajectories and trace progress of a condition as well as its effect on daily life.
To survey patients is not new. Most doctors have always done that when thye question patients individually about pain, the effect of a condition on their mobility, daily activity, mood. A group study to see trends has been found helpful and many clinical studies have groups of patients come to the clinic, attend group sessions, answer questions and help researchers see patterns.
Because of the higher education and literacy rate of patients and easy access to technology, the medical profession is more often now asking patients, especially those with rare and incurable medical conditions, to tell more about their lived experience.
C. Advantages of an online survey
Asking the patient for questionnaire input has been a useful tool used by researchers for decades. Questions can be asked in person, in clinic or over the phone. However with online technology, responses can be collected with nearly no staffing cost and less imposition on researcher time. With computers, trends can be collected in aggregate.
The online format for asking questions has some features different from an in clinic study. These differences may affect results somewhat.
This survey has taken an approach that is intentionally patient-friendly
-it uses ordinary language
-it uses categories based on experience with the condition. It does not label the type of dystonia but the body part affected because this is easier to understand.
The survey is longer than most surveys because dystonia is complex. To capture it requires many questions. The surveys were divided into sections, some for anyone with the diagnosis and others to answer only it the topic applied. .If a question did not apply, the respondent was encouraged to just skip over it.
It was a top priority to make the surveys flexible. People with dystonia often have challenges sitting at a computer, seeing a screen or using the hands comfortably so it was high priority to make it possible to do some questions, take a break and return to answer more. Questions could be skipped over, unlike many survey designs that will not let respondents proceed without answering every question. In this way respondents have very wide freedom to feel comfortable taking part as they wished, and when they wished.
This style of surveys, anonymous but online, has numerous other advantages:
-to mail a survey costs money based on weight of paper
-to phone a survey takes time of interviewers and respondents
-to email a survey permits a longer survey but requires that researchers know emails of people. Finding who to ask may take nearly as long as the decision of what to ask.
-a survey administered in a clinical setting takes time in an office visit, time at the parking meter, precious time of the researcher and time of the respondent from a busy day
However with this patient-driven survey most of those problems are already solved
1. The respondent does not have to go to a clinic, so there is no travel cost, no travel inconvenience, no parking cost.
-there is no cost to mail it
-there is no staff cost to phone it
-there is no staff time required to ask the questions
-there is less inconvenience to the respondent because the respondent comes to the researcher at their own convenience.
2. The respondent does not have to physically relocate to do the survey. There is no problem with mobility to go up stairs or elevators or down hallways.For those with a movement disorder this means an online survey is very convenient.
Those with dystonia who have mobility challenges can still do it and don’t have to come to an office. Those with dystonia affecting speech can still do it, which they might no be able to do over the phone. Those with dystonia affecting ability to do handwriting can still do it because they can use a computer that is always legible or can dictate to a friend
3. The survey can reach people who would have liked to take part in a clinical study but do not live anywhere near the clinic. Because dystonia is rare researchers have trouble finding candidates for clinical trials. They often are only able to assemble in person a few dozen. Researchers may be frustrated after working hard to create a useful study and unable to find a large enough group to make it statistically valid. Even finding a gender balance is difficult because clinical studies are often not well advertised. An online international survey may help get past that hurdle and provide be a wider sample for researchers.
4. The survey can reach people who would not take part in a clinical study because it is too public. They would have to be seen by other people and some may want more privacy. They may feel embarrassed at their condition or may be in a situation where there is stigma to admitting it and taking time from paid work to attend clinical trials. An online survey gives privacy.
5. When a person is asked about whether there is any dystonia in the larger family, researchers have suggested a person take some time to imagine each family member . One research study suggested the respondent look at a photo of a family gathering to help them recall gestures and body movements of people as they answer the question. Looking at old family photos is not an easy activity to do in a clinical setting but is much easier at home with an online survey .
6. Researchers who study dystonia are busy. They often also are treating patients with other movement disorders too. An online survey asks patients to put in the time to answer questions and then researchers can look at the aggregate results.
7. Researchers make proposals for a research study, apply for grants, and wait in line to see if they get funding to do the study. Since many research proposals do not get funding, and the ones that do are often for more common medical conditions, a study of dystonia may be delayed for financial reasons. An online study bypasses that delay. This survey project was set up without cost to respondents or to researchers, and is free to use. Any researcher in the world will be given access to the aggregate results, without cost. In that way it is designed to be a database widely available .
D. Drawbacks of this online style
1. Those without Internet access cannot do the survey
2. Those without Internet access may not even hear of the survey to consider doing it or not
3. Those who do not read and write English cannot do the survey (Though the website has been viewed in over 80 countries, it was viewed most often in countries with a high percent of people who speak English. The survey would have had many more respondents were it also available in other languages. There were some who did write that they were translating questions to fill out the survey.
4.Some with dystonia were unable to take part and informed the researcher, and the reason was because of dystonia. Blepharospasm in particular makes doing online surveys difficult..For some patients, a phone survey may be better..
5. If a dystonia condition is worse only doing certain activities, such as playing piano, golfing or speaking on the telephone, the situation is hard to capture in a clinical setting. It is also not possible to demonstrate it in an online survey. In both situations the respondent has to recall the situation and try to describe it.
E. Advantages of self reporting
1. The respondent can be honest. Since they are experts about how it affects their day and they are the ones observing it 24-7 they are in the best position to notice and report its changes. It is not possible for a clinic visit to capture this view over time except in snapshot.
2. The respondent does not have to worry about the personal interaction with a live interviewer. A clinician may seem tired or busy and the patient may out of politeness try to hurry answers or not admit to some smaller concerns.
3. The respondent in person may not want to report negative experiences with a medication this doctor prescribed, to not hurt their feelings. The patient may not want to admit some of the worries they have in order to seem brave for the moment, but on paper might be more honest about what keeps them awake at night. Patients may not want to admit worries that would put them at risk of being labelled as having mental health challenges, a label they may fear.
F. Drawbacks of self reporting
1. Those who take part in a survey may be more motivated than other patients to try to help with research, or may have a personal issue they hope will be addressed. They may have a bias of sorts for why they participate. However clinical studies that seek volunteers to participate also run that same risk. It may not be a real disadvantage. Those who want to take part are also likely to make the time to answer carefully and honestly.
2. With self-reporting, no researcher is observing the respondent’s physical condition. There is no 3rd party expert comparing this person’s skills to a norm. A person answering about their own ease of movement has only their own frame of reference. However, sometimes the patient perspective is actually what may matter most. If a person feels their pain is intense or mild, that is how they experience it. If they report their anxiety level is low or high , that is how they experience it and the effect on their day is based on their perception.
3. With self reporting there is always a risk a person may lie. There is no third party validation. However for any clinical study also questions asked about symptoms only the patient can report, such as fatigue, pain, anxiety, also rely on honesty . The risk of lying is there but is deemed no greater than for any other study. It is considered unlikely that patients would like on these surveys simply because there is no advantage to them to lying.
G. Anonymity
It was decided to not ask for identity of respondents . This is a potential flaw of the study. However it was decided that it was the more practical option. There is no public institution giving up medical information and no access given to medical records so there is no privacy being violated. The surveys do not register name, location, age, gender, medical or personal history, financial or career history or any other information of the respondent. Nothing is known of who did the surveys except IP address used to access them and that IP address was known only to the Survey Monkey platform.. Even that IP address was deleted when the surveys were completed. The surveys are completely anonymous.
advantages of anonymity
1.Respondentscan be honest. There is no judgment, no stigma. Dystonia has been recognized by researchers as a very visible disorder and many with the condition avoid social contacts. Often patients report social awkwardness with clerks talking down to them or people assuming that since their voice is odd that they are just joking. An online survey removes the hurdles people may have to opening up about their real thoughts.
2.. The respondent does not have to be embarrassed. Problems with family relationships, or dressing or bathing may be embarrassing to talk about in person but may be easier on paper.
3. There is a freedom from being labelled by the medical community or put into categories for mental health issues if some fear that would happen. Many people with dystonia have said anecdotally that it took a long time to be diagnosed correctly and along the way they had some negative experiences with not being understood, not being believed, or being given treatments that did not always help. Once they had a diagnosis they were often relieved but also a little nervous about trust. An anonymous survey lets them be frank without fear of further repercussion.
Drawbacks of anonymity
1..There is no guarantee the respondent has dystonia. The surveys were advertised to patients and clearly indicated that they were for those already diagnosed.. It is possible some surveys were done by those who were misdiagnosed, or not diagnosed or who have other conditions in addition to dystonia. The goal of the surveys to see patterns may still be met however. If the number of respondents is high enough, accurate patterns will likely emerge even if there are some outliers in the study.
2. There is a remote chance a person may lie, though that risk is felt to be low.
3. The purpose of the surveys is to see patterns. Optimally patterns emerge when correlations are seen between answers – causes with some types of dystonia, symptoms with some causes. However the surveys do not know patient diagnosis or medical history so are unable to tally such correlations. However patients may by their responses still reveal patterns useful to study. They may point a direction. Further clinical studies would be needed, ones which have access to patient medical history . The goal of the surveys then is to suggest some very good questions to ask.
Lived Experience With Dystonia 