LOW HWEE KENG

Abstract

We collected and analysed data from Parkinson’s disease patients and caregivers, regarding patient care and experience at Clinic L (National Neuroscience Institute, SGH).

From the process, we gained a deeper understanding of the condition and needs of the Parkinson's disease patients, the research done on Parkinson’s disease, the therapy available, and how the neurology outpatient clinics are run. With this, we proposed solutions to the problems raised by the patients and caregivers.

Working with our mentors, Prof Tan Eng King, a senior consultant neurologist, and Ms Lim Ee Chien, a clinical research coordinator, we put together a report detailing our learning process.

Background information of the projects/tasks which I was involved in

The WOW! Attachment aimed to allow us to:

• Acquire basic knowledge of Parkinson’s disease and other neurological conditions encountered
• Experience how neurology outpatient clinics are run
• Shadow the clinical trial coordinator(s) in their day-to-day job flow
• Experience first-hand basic-translational research lab activities
• To collect data on Parkinson’s disease patients’ care and experience. Through their opinions and suggestions, we hope to be of help to the hospital in improving patients’ experience at the hospital. Parkinson’s disease is a chronic disease which requires long-term medical care. To ensure a stable condition that does not deteriorate, much care and support from the hospital is needed, be it through providing information on the illness or through social support groups.
• To propose solutions to the problems raised by the patients and caregivers.

Elaboration/record of the activities done

• Sat in during Prof Tan’s consultations
  • With basic knowledge on Parkinson’s disease symptoms and diagnosis, we could vaguely understand patients' conversations with Prof Tan. Many patients were his old patients and we could sense that trust had been established between Prof Tan and his patients. It is with this sense of trust that patients will be more willing to be upfront and honest with their condition and problems that they face, thus allowing the doctor to provide better medication to better their symptoms.
  • Through the consultations, we were given a basic background on the problems that Parkinson’s disease patients face and the doctor’s recommendations. This aided us in crafting our survey questions and gave us the basic knowledge we require when holding a conversation with patients about their condition.
  • It was also rather challenging to understand certain medical terms at first, but after much research and inquiring, we were able to better understand the consultation sessions.
• Carefully crafted a survey consisting of 28 questions in both English and Chinese to find out more about Parkinson’s disease patients’ experience and care received. The survey form can be assessed via the following link: https://forms.gle/aEMjK8F7HptJaDtH7
  • This allowed us to collect Parkinson’s disease patients’ and their caregivers’ opinions on patient care and experience. Through interviewing them individually, we were able to understand more about the problems that the patients face as individuals. Each patient’s journey is unique and will require different types of assistance.
  • We had a better understanding of what the clinic has done well in, and the different areas of improvement required.
• Summary of common problems which the patients face when they visit the clinic
  • The results obtained showed that long waiting times, unawareness of possible tools and facilities that could improve their experience, and a lack of information on their illness were the most common problems raised by Parkinson’s disease patients and caregivers.
• Tabulation and analysis of results
  • We compared the data obtained from patients and caregivers and analysed the different trends. By trying to identify the rationale behind these trends, we were better able to understand the thinking and mentality of Parkinson’s disease patients and caregivers, and come up with proposed solutions to better their experience.
  • However, some of the results were inconclusive and did not show an obvious trend. This made the analysis process rather challenging.
• Proposal of possible solutions regarding problems investigated from survey results
  • As many of the problems have gone unresolved for long periods of time, it was very challenging for us to propose solutions to the problems with the little knowledge that we had on the system.
  • The brainstorming process allowed us to tap into our creativity and think out of the box for feasible yet affordable solutions.
• Visit to research labs
  • We learnt more about the job scope of a researcher, and the nature of the job. Research involved experiments which often required many failed experiments before the desirable results may be obtained. Important qualities in a researcher include patience, perseverance and resilience.
  • We were able to observe 1) the making of fly food for the drosophila flies. These flies were genetically modified with genes that cause a higher risk of Parkinson’s disease in humans. 2) The separation of neutrophils and monocytes from a blood sample using negative selection. Antibodies were first added to the samples to give the unwanted cells a magnetic property. The samples were then left in magnets to separate the unwanted cells.

Elaboration/record of results/deliverables/impact of work done

Survey results & Analysis

Regarding waiting time, no patients waited more than 2 hours normally. However, the majority still had to wait between 30 minutes to 2 hours.

Waiting time was a major complaint. This is a major concern as patients who wait longer usually become more irritated and unhappy. Many patients are old and cannot wait for long periods of time, especially for those who are on their “off” periods. Hence, they may kick up a fuss, demanding attention from the nurses and staff. This in turn causes scene, which may turn ugly without proper handling of the situation.

Furthermore, the waiting time held in regard in this survey only pertains to the waiting time between registration and seeing the doctor. The total time patients spend in the hospital, including the waiting time at the pharmacy, is usually much longer. This is a long standing issue which seeks to be resolved.

Most patients found that well-explained treatments and an overview of the illness is the most important thing during the consultation. From this, we can infer that the majority of the patients would like to have a deeper understanding of their illness. A large number of patients also valued the doctor’s respect and care, which shows that the doctor’s attitude during consultation plays a very big part in terms of patient satisfaction.

Most patients try to adhere to the doctor’s orders and recommendations for therapy and treatment. This shows that their self-enforced treatment will still be rather effective. However, it was also highlighted that some patients are unable to follow certain orders due to the nature of their illness. For example, some patients are unable to move or think clearly during their “off” periods. During these periods, it becomes nearly impossible for them to try and follow the doctor’s recommendations of trying to stay happy and exercise more. These patients will require more assistance to ensure that the doctor’s orders are followed. This can be done by launching the Community Care Project. (Refer to proposed solution 6.)

The majority of patients were mostly clear about the symptoms and health problems to look out for regarding their illness. However, many of the patients were unaware of pamphlets around which could provide them with the accurate and precise information that they needed. Many were also unaware of digital platforms that they could turn to: health buddy etc. (Refer to proposed solution 2.) This results in many patients requesting for more information on the illness (refer to survey results). Understanding their illness is a step nearer to the patients having a better understanding on how they may care better for themselves, reducing the number of consultation appointments being made.

There are varying levels of independence that the patients have in terms of caring for their illness. For patients with more severe PD and are not so independent in taking care of themselves, the Community Care Project would most likely benefit them more as the nurse can check in with them more frequently to ensure that their condition is still stable and to help with any other things if necessary. For patients that are more independent, the nurse check ups can be less frequent but they can possibly be a defence line to prevent the deterioration of the condition and to ensure that the patient is doing well.

The majority of the patients were able to navigate their way around the hospital without any assistance from the staff, leaving positive feedback about the large font size of the signage around the hospital. However, many patients have commented that the routes were getting a little confusing with the construction work going on around the hospital area. That said, many patients still had faith that things would get better when everything was restored after the construction work was completed. Some patients also recommended adding directions in Chinese. This would benefit the older patients who are only able to read Chinese. On the other hand, there were many complaints about parking, and distance of the clinic from the car park. Many patients commented that the car parks that they had parked at were very far away from the clinic and was very inconvenient. This revealed that many patients were unaware of car parks nearer to the clinic (e.g. OCH). When questioned, many patients were also worried that they would be unable to find their way to the clinic if they were to park at another car park.

The majority of the respondents would prefer to receive their required care at the same location, on the same day. Many commented that this would be more convenient, especially for patients with movement disorders, as they would not have to travel from one clinic to another. The majority of the respondents also felt that this would be a highly feasible scheme if waiting time between the appointments could be kept under 60 minutes. However, some also felt like this scheme would be ineffective as they thought that a whole day of treatments would be too tiring for them, especially for patients with more severe symptoms. (Refer to proposed solution 3.)

To ensure the effectiveness of this scheme, much work still has to be done to ensure shorter waiting times between the different appointments. Location and space will also be another major problem if the different disciplines were to work together in the same area.

With comparison, we can see that more patients would not prefer a one-stop integrated care centre as compared to non-patients. This could be because the patients understand their condition better and feel that this arrangement could be too tiring for some of them.

A larger number of non-patients preferred a one-stop integrated care centre as compared to patients. This might be due to the fact that this will be more convenient to non-patients as they will not have to assist the patients in moving around. As most non-patients are the family members or caregivers of the patients, most of them need to take leave from work in order to accompany the patient to go for consultation. Thus, the one-stop integrated care centre would ensure that the caregivers and family members will be able to accompany the patient throughout the different sessions. The non-patients can then go on to reinforce the techniques and exercises learnt during the therapy sessions better since they are able to accompany the patient for the session.

The majority of patients had no one to turn to in the community regarding their condition. This shows that the care provided for Parkinson’s disease patients is still insufficient and more work needs to be done. We hope that through the Community Care Project, Parkinson’s disease patients will have someone to turn to in the community in the future.

The majority of the patients thought that the Community Care Project, where nurses will conduct house visits to the patient regularly, (refer to solution 6.) would be useful to their illness as the checkup would ensure that the dosage of the medication is still suitable and effective, and the condition of the patient is not deteriorating. However, some claimed that their illness was already stable and that visits by the nurses would not change anything. Others commented that it might be difficult to successfully facilitate this project as problems such as not being at home during the appointment and being uncomfortable with a stranger at home may arise.

Proposed solutions

After consolidating Parkinson’s disease patients’ needs and suggestions, we have identified the main problems to be: long waiting times, unawareness of possible tools and facilities that could improve their experience and a lack of information on their illness.

To alleviate these problems, we came up with multiple solutions below, indicating both their pros and cons for a better understanding and evaluation.

1. To reduce total time spent in hospital

As can be seen from the survey results, lengthy waiting times are often the main complaints of patients with Parkinson’s disease. However, waiting time cannot be eliminated completely. Instead, we can aim to reduce the total amount of time patients spend in the hospital. As such, we propose the following:

• Reduce delays during consultation (Refer to 1.2. and 3.)
• Emphasis on mobile payment, online booking of appointments and medication delivery (Refer to 1.5)
  1. 1.To provide information on queue time

Lengthy waiting times may often be a bore, especially when patients do not dare to leave the waiting area in fear that they may miss their queue number. Hence we propose that the hospital provide digital wristbands, displaying the patient’s queue number, estimated waiting time left and number of patients before designated consultation slot. When there is one patient left before the designated consultation slot, the wristband can be programmed to vibrate, reminding the patient to proceed to the consultation room. This will give patients the freedom to move around before their queue number is called.

Other features of wristband include:

• Adjustable strap to fit any wrist size
• Large LED screen to ensure that older patients with eyesight problems are also able to read
• Linked to system, can be updated regularly
• Audio capabilities (alarm)
• Waterproof

As this solution might be slightly costly, the supply of wristbands may not be sufficient, hence we propose using the wristbands only when the estimated waiting time exceeds 45 minutes.

To ensure that the wristbands are returned, each wristband will be assigned a number that has to be keyed in and linked to a patient’s records upon registration. This will allow for accountability should the wristband be misplaced. The wristbands will be returned upon payment. For efficiency, the wristband can be dispatched through the self-registration kiosk.

1. 2. To prevent delays during consultation

If needed, the wristband can also be programmed to vibrate when consultation slots are almost over. Again, this can be specially carried out when the clinic is very crowded. This will serve as a reminder for patients to respect the duration of their consultation time slots, and quickly wrap up their consultation with the doctor. A similar reminder can also be given to the doctor to signal the end of the consultation.

1. 3. To give priority to patients with more severe condition

Some patients have more severe illnesses than the others and will get restless and frustrated more easily. This also applies to patients who are not on their medications or are on their “off” periods. These patients should be given medical attention first due to their inability to wait for extended periods of time.

To ensure that this does not create a loophole in the system, these prioritised patients have to be certified by the doctor. Only with official confirmation from the doctors can the patients be given a priority queue.

1. 4. To ensure that the queue number called for each room can be seen from all seats within the hospital

LED screens display the queue number of the patients being called for consultation. To ensure that patients do not miss their queue number, the LED screens should be designed or situated at a place where it can be seen from all the seats. Currently, the LED screens are situated directly above certain seats as can be seen from Image 2. Patients sitting directly below the LED screens are unable to see the numbers easily. This could result in patients missing their queue numbers, or require the clinic assistants to walk out of the room to call patients, thus causing a delay.

Alternatively, to ensure that patients are notified when there is only 1 patient before their allocated time slot, an SMS can be sent to their mobile phone. Refer to 1.1. on how to provide more information on queue time.

1.5. To increase efficiency of payment, booking of appointment and medication delivery

The clinic assistant in the consultation room could be provided with a computer with access to the doctor’s schedule and available appointment slots. This way, the clinic assistant is able to make an appointment in the consultation room itself instead of writing “Next doctor’s appointment in 6 months” and the patient has to wait at the counter to make their next appointment. The patient can then directly make payment at the counter or choose to pay via digital means, thus saving them from more waiting time.

To decrease the time taken for payment, we propose to have an auto generated QR code for the tax invoice at the end of the consultation. The patient can then scan the QR code and pay online directly instead of having to wait for their turn at the counter to pay. This also allows the patient to immediately leave the clinic and head to the pharmacy to pick up their medication without having to spend more time waiting unnecessarily.

When it comes to the collection of medicine, one problem that causes the long waiting time is that the pharmacist has to ask the patients how many months worth of medicine they want to collect. Thus, we propose that the patients put an online order for the medication and indicate directly how many months worth of medicine they want to collect. The queue number for the collection of medicine at the pharmacy can also be issued as soon as the patient places their order. With this system, it would increase the efficiency of processing the orders and ultimately reduce the time the patient spends in the hospital.

2. To create a new front for SingHealth mobile application

When the SingHealth mobile application, Health Buddy, was first featured in the app store in 2013, the application held many promises, yet failed the high expectations of many users as the application was inefficient, too complicated for old users, and troublesome (a SingPass authentication is needed each time a user logs in). As a result, many Singaporeans have chosen not to use the application, originally designed to cater to patients’ needs. With time, the application had faded into the background with many bad reviews on the AppStore, despite the improvements already made to the application.

Hence, we propose that more publicity can be done on the application to increase public awareness. This can be done by:

• Social media publicising
• Television commercials
• Eye-catching posters around hospitals and polyclinics

While such an application has security concerns, the SingPass login with the mobile OTP, although troublesome, is already an improvement from needing to use the SingPass device for every login previously, and continues to ensure the safety of the user’s data.

However, this security measure also means that caregivers are unable to use the application to manage appointments on the patient’s behalf. This would deeply inconvenience many old patients. As such we propose the following:

Each patient can officially register one caregiver into the system. With official consent of both parties, the caregiver will be able to manage appointments on behalf of the patient for one month. One month later, the caregiver will have to re-register to ensure that third party organisations do not make use of this loophole to earn money.

Another improvement that can be made to the application is to provide medication reminders. Many patients have an overwhelming number of medication to take and different doses of each medication have to be taken at different times of the day. The reminders should be entered by the pharmacy, but can be customised at the patient’s end.

3. To facilitate and improve a one-stop integrated care centre

Many patients have indicated that they would prefer their care to be organised such that all their appointments can be carried out at the same place and within the same day. This would be much more convenient, especially for patients with movement disorders.

However, this would mean that since the different appointments will follow closely behind one another, a slight delay in any of the appointments will cause a chain effect and eventually lead to lengthy waiting times. A delay in an appointment can be caused by a patient being late for his/her appointment, the consultation overrunning, or other hidden factors.

As such, to prevent the consultation from extending into the next time slot, we propose installing a ringer in every consultation room to remind both the patient and the doctor when the slot is over. This may be slightly rude and offensive to some patients, especially those who genuinely require the attention of the doctors. Refer to solution 1.1. for a less invasive option.

Patients have also highlighted the fact that a full day of treatments may be extremely tiring for some and would rather the treatments be spaced out. This would render the one-stop integrated care centre less effective improving patients’ experience. Hence, to ensure that patients can fully utilise the one-stop integrated care centre, we propose the following:

• To create a restful environment in the waiting area for patients to allow them to take a break between appointments (refer to 5.1.).
• To have nurses on call to learn more about each patient’s condition or to answer any queries if they cannot be answered from the FAQ tab on the website. Nurses can do shifts, allowing patients to book 15 minutes slots when needed. A “press to call” ringer can be left at the counter for patients to use. As Parkinson’s disease often require the physical assessment of symptoms, this will be more beneficial to patients as compared to online platforms (refer to 4.1.). This will also reduce the amount of time the doctor spends answering patients' queries, preventing further delays during consultation. However, a few older patients may still have the mindset that nurses are “less qualified” than doctors and may not trust the words of the nurses, thus reducing the efficiency of this system.
• Recreational activities can also be carried out (E.g. movie screening, arts and craft, etc.)

4. To provide patients with more information on their illness

While many patients have claimed that they are aware of the symptoms and health problems do look out for during their illness, many patients have also stated that they view well-explained treatments to be of utmost importance during their consultation.

To improve patient’s understanding of their treatment routine, comprehensive videos with subtitles and audios of different languages can be made available on hospital tablets which can be passed to patients after their consultation. This will allow them to have a better idea of how their treatment should be carried out and the things they should take note of during their treatment. These videos can also highlight reminders that Parkinson’s disease patients should commonly note, such as to exercise regularly, so that the patients are able to maintain a stable condition.

4.1. To increase patients’ accessibility of information and facilitate patient communication

As Parkinson’s disease is a chronic illness, patients are bound to have many queries throughout their illness. Currently, most patients only visit the doctor every 6 months to 1 year and within this period of time, information about their illness is not readily accessible. Furthermore, the consultation time is very short, hence many patients and caregivers feel that they do not have enough time to ask the doctor their questions.

To ensure patients have maximum understanding of their illness, we propose exploring the use of virtual assistants (VA) and artificial intelligence (AI) technology on the official NNI website.

This will mean that patients will be able to access the information they need conveniently, whenever the want. Through the virtual assistants, patients are able to obtain quick and direct answers to their queries without having to know which agencies to approach, reducing the need for call centres. The virtual assistants will have the ability to redirect patients to the relevant websites and improve patient experience overall.

However, Parkinson’s disease often requires physical consultation due to the nature of its motor symptoms. Online information may be inaccurate without proper diagnosis. Hence, virtual assistants may not be useful to all Parkinson’s disease patients. (Refer to 3. for solution involving physical consultation)

5. To improve hospital environment

Patients have left comments on insufficient chairs, poor lighting and cluttered consultation room.

5.1. To improve the environment in the waiting area, we propose the following:

• Change all yellow lights to white lights
• Add more greenery
• Better colour coordination of walls (current colours: faded green and milky/off white)

• Blue: refreshing and relaxing colours, creating an atmosphere which promotes peace. The healing effect the colour conveys is said to aid recovery.
• Green: associated with nature, growth and recovery
• Milky white: Clean and sanitised, without the glare of pure white
• Soft and relaxing background music
• Resting area (library-like environment, no noise allowed, conducive environment for patients to sleep/rest when waiting time is long)
• More spacious walkways, to facilitate smooth movement for patients in wheelchairs
• Increase number of chairs
  1. To improve the environment in the consultation room, we propose the following:
• Have the doctor and the patient sit side by side to view the computer screen together
  • Semicircular desk
  • Patient also has the ability to access the information on the screen
  • Patients feel more involved in the process of decision making and are able to engage better
• Positive distractions such as indoor plants (that are non allergy-inducing), an artwork

6. To facilitate and improve community care project

Parkinson’s disease patients usually have a time interval of about 6-12 months before their next appointment. During this period of time, it may be possible that their condition deteriorates or that the medication becomes less effective. To ensure that the patients’ conditions remain stable, eligible patients can apply for community nurses to pay them house visits.

The same nurses will be seeing the same patients to ensure that trust and rapport is built between the patients and the nurses.

Through this project, the nurses will be able to learn more about the patients’ condition on a day-to-day basis and with this information conveyed to the doctors, the patients’ treatment can be better planned to be more effective.

However, some patients feel that such a project will not be very helpful as some patients’ conditions are either stable without concern or have deteriorated too badly that they live in nursing homes with people to care for them. To ensure that efforts and resources are not wasted, we would like to propose the following:

• Proper assessment to be done such as to ensure that the patient needs help from the community
• Appointment timings be enforced with strict rules on both sides to prevent delays and inconvenience

7. To provide a one-stop resource centre for the convenience of the patients

To maximise the convenience for the patients, we propose that a PD app can be crafted to have the following functions for the patient’s easy access:

• Reminder system when the appointment date is drawing near
• Vibration system to remind the patient when it is time to enter consultation room (see 1.4.)
• QR code scanner to access tax invoice OR have tax invoice directly available on the app (see 1.5.)
• Order form for medication (see 1.5.)
• Book a nurse for asking of queries (see 3.)
• Digital copies of information booklets on the condition
• Explanatory video (see 4.) and relevant episodes of TV shows
• Virtual assistant to answer Frequently Asked Questions or other predicted questions (see 4.1.)
• Links to relevant websites (information on condition, PD society, information on Medisave and Medishield etc.)

3 content knowledge/skills learnt

1. Knowledge on Parkinson’s disease

Parkinson’s disease is a progressive neurodegenerative disorder that is caused by abnormal function in the area of the brain called the basal ganglia, which is important for coordinating movement. As a result of the progressive loss of brain cells in a structure of the brain called the substantia nigra, the dopamine levels in the brain drop below normal levels. Dopamine is a neurotransmitter, which is a chemical found in the brain that allows for the passing of electrical impulses between nerves. Dopamine is involved in movement control, thus causing movement disorders, one of the symptoms of Parkinson’s disease.

The cause of brain cell loss is still not fully understood, but some rare genetic causes have been discovered that have helped doctors better understand the condition.

Parkinson’s disease is more common in elderly and the risk of getting Parkinson’s disease increases with age, with the average age of onset of the disease being 65 years old. Studies show that only 10% of cases are in younger people younger than the age of 40.

The cardinal symptoms of Parkinson’s disease include slowness of movement (bradykinesia), stiffness (rigidity), shaking of limbs when at rest (tremors) and stability problems when walking or standing (postural instability).

The non-motor symptoms include inpaired smell, constipation, drooling of saliva, aches and cramps, low blood pressure, depression, sleep problems. Common signs of Parkinson’s disease include an expressionless face, softer voice/ slurred unclear speech (dysarthria: when speech muscles cannot make fine movements required for speech), smaller handwriting, difficulty in swallowing and walking difficulties.

These symptoms may result in patients facing difficulty with self-care activities, home management activities, vocational activities, driving and leisure activities.

Till this day, there remains to be no cure for Parkinson's disease, but effective treatments are widely available to control symptoms and improve daily function. Such treatments include therapies and medication. Minimally invasive surgery is also available to treat patients with advanced condition.

To enhance the quality of these patients’ lives and allow them to be integrated into society, optimal care from the society they live in is required. Our study aims to discover the care that Parkinson’s disease patients seek and in comparison with other countries’, propose solutions to improve patient experience.

2. Communication skills

Through interviewing the patients, we managed to hone our communication skills. Many of the patients do not speak English, and thus, we had a chance to converse with them in Chinese. Other times, the patients did not really understand our questions, and we had to think on the spot to rephrase the question, such that we could elicit the desired response from them. Critical thinking was also used here.

When communicating with the patients, we have to keep in mind their level of comfort when sharing their personal information and experiences with us. We also have to say “the right thing” to prevent offending any of the patients as disillusions are also a common symptom of Parkinson’s disease.

3. Observation skills

Everyone around us was always very busy and did not always have the time to answer our questions. It is through observation that we are able to learn more about the system, the people and the patients. Observing the patients’ body language was also a good tool in determining whether the patient was keen on participating in our survey. Generally, it was a good tool in helping us keep out of patients’ hair.

2 interesting aspects of our learning

1. The job nature of a clinical research coordinator can be very stressful. Their job scope is very wide and involves recruiting patients for their research projects and helping out in Prof Tan’s clinic.
2. Our first experience in the medical research lab was interesting as we did not know much about medical research initially.

1 takeaway for life

To care for our family members when they are in need. Parkinson’s disease is a chronic illness and with it also comes many emotional hurdles. It is during this trying period that patients need the most support from their family. Some patients, old and frail with their walking disorders, often stumble into the clinic by themselves and this scene breaks my heart. Those with their family, or their loving spouse, were obviously happier than those without. If we could all remember to be patient, and care for our family members when they are ill, I am sure that the world would be a significantly better place.