**1. Introduction**

Cystic Fibrosis (CF) is the most common life limiting genetic disease affecting Caucasians. Patients must adhere to rigorous therapies in order to manage their condition. Such therapies include airway clearance physiotherapy, medications, diet, and exercise.

Ireland has the highest prevalence of CF worldwide, with 1 in 19 people being carriers for the CF gene [1]. Despite this, the life expectancy of patients with CF is rising. A child born with CF in 2009 is now predicted to live into their 50s [2, 3], compared to children born in 1950, of which half would live to the age of 16 and only 3% to 25 years old [4, 5]. However, this increase in life expectancy comes with an increase in patient population. There are now more adult CF patients than pediatric patients in Ireland [6]. It is projected that the pediatric service will need to grow by 25% and the adult service by 75% by 2025 [7]. This growth in adult population and the advent of ICT technologies in the medical space has led to mobile health applications (mHealth apps) being identified as potential powerful

tools to assist the growing and ageing CF population in the management of their condition. However, any mHealth app developed in this way must be fully personalisable in order to fit the heterogeneous nature of the treatment and management of CF.

the medical data needed to treat the patient immediately [13]. Another example of these paper-based passports can be seen in the research carried out by Barber et al. [14]. This passport was developed as a medication aid and allowed geriatric patients to record and review their medications and dosages. The researchers found that this system empowered patients to be more in control of their medication and also acted as a mechanism for the patient to communicate and discuss their medications more confidently with their medical team [14].

*Designing Heterogeneous-mHealth Apps for Cystic Fibrosis Adults*

*DOI: http://dx.doi.org/10.5772/intechopen.85512*

Patient passports have also been created for other long-term conditions, such as

When researching "CF Patient Passports", only two bodies of work were found. The first was a book titled "The Cystic Fibrosis Passport" by Fitzgerald, which aims to aid family members in understanding the needs of children with cystic fibrosis, and to serve as a practical guide to those who care for these children [16]. The second was a quality improvement initiative taken by the Stanford CF Center, which presented a paper-based system that used a passport-sized document containing instructions on how to care for a patient with CF [17]. The document could be presented by a CF patient to a hospital or clinic to ensure the correct

diabetes. Similar to other chronic conditions, diabetic patients must meet with various members of the multidisciplinary healthcare team. For diabetic patients, passports can be beneficial as they allow the patient to record medical data received from each member of the diabetes multidisciplinary team [15]. In this way, passports bridge a communication gap between patients and these various multidis-

measures are taken to avoid potential issues with infection and cross-

such a tool would be beneficial to adult CF patients.

**1.3 Possible issues with patient passports**

**107**

contamination. Although both passports are important for the care of CF, they do not include features common to long term condition passports as they do not facilitate self-reported medical data that is accessible to patients at all times.

The previous section outlines cases where patient passports have been used advantageously for patients; asthma patient information, diabetic patient information, medication aid. However, patient passports can also present other challenges which may lead to low adoption rates and minimal impact on patient experience. To investigate this further, Dijkstra et al. interviewed diabetic patients and medical professionals to understand their experience of implementing the passport into their current care system [19]. Concerns expressed by the patients were predominantly focused on security, forgetting the passport, being over encumbered, and need for additional time to enter information into the passport. For security, patients were concerned of the ramifications of losing the passport and the threat

In addition to paper-based CF passports, a search was performed for digital CF patient passports on both the Google Play and iOS mobile App Stores. From this search, only one app was found that allows CF patients to record their medical data, similar to a passport; "CF View" [18]. CFView is an app which was created by "CF Ireland", a CF charity in the Republic of Ireland. The app allows patients to view medical data that has been collected regarding their condition; however, it does not allow patients to enter or save data. In addition to this, CF patients can only use this app if they are part of a CF registry in Ireland, Denmark or Slovenia, and have been issued with an account by that registry. From the findings of the paper based and digital based search, it would appear that there is no freely or publicly available CF patient passport system that allows patients to record basic medical data. Considering the benefits of a patient passport, it can be stipulated that

ciplinary members [15].

In this chapter we will discuss the design and development of a patient passport mHealth app for CF adults; from ideation to app-store release. This chapter will first begin by introducing the CF unit responsible for its development, before discussing patient passports. Following this, the chapter will introduce the development of this mHealth app which follows the mHealth Design Pipeline as presented by Vagg et al. [8].

#### **1.1 Cork CF multidisciplinary team**

CF clinical care is driven by a multidisciplinary team approach. The CF Multidisciplinary Team (MDT) comprises of a mixture of healthcare professionals with varied skill sets to support this multisystem condition. This includes a CF nurse specialist (designated and working full time in CF care), CF physiotherapist (designated and working full time in CF care), and CF dietician (designated and working full time in CF care). The team is supported by a respiratory technician (with a commitment to CF) and psychologist. The MDT is medically-lead by a respiratory specialist with an interest in CF. The respiratory physician/specialist is also supported by a lung-disease research/specialist registrar [9].

The CF MDT at the Cork University Hospital includes: three CF nurse specialists (>30 years collective full time experience in CF care), one dietician (>10 years full time experience in adult and pediatric CF care) one senior physiotherapist (>5 years full time experience CF care), one respiratory technician (>20 years full time experience), and one CF consultant with 10 years as the director of the Cork unit and 10 years' experience in other leading centers both nationally and internationally.

This multidisciplinary team supports the second largest CF center in Ireland with over 180 adult CF patients. The Cork CF multidisciplinary team also lead CFMATTERS; an international multicenter consortium exploring antibiotic therapies in CF [10]. In addition to this, the research team includes a dedicated medical-multimedia research specialist who works directly with the MDT.

#### **1.2 Patient passports definition and review**

A patient passport is described by the National Quality Forum (NQF) and Health Service Executive (HSE) as a paper-based system which provides immediate and important information regarding a patient's health or condition to medical professionals [11, 12]. This passport system is implemented for a number of reasons, such as improved patient experience, improving the speed that care is delivered, and as a solution for those patients with learning disabilities [11, 12].

An example of such a passport can be seen for asthma management in the research conducted by Newell et al. [13]. The paper-based passport as presented in this research is developed to store pertinent medical information that an asthmatic would require to receive care on entering an emergency room. Newell et al. found that patients would often experience more fear and stress in this situation as responding medical professionals may ask the patient to repeatedly speak to gain an understanding of this patient's condition, or leave the patient alone so that they can source the information. The paper passport solution is designed to be small and convenient to carry (the size of a credit card) and can provide medical professionals

#### *Designing Heterogeneous-mHealth Apps for Cystic Fibrosis Adults DOI: http://dx.doi.org/10.5772/intechopen.85512*

tools to assist the growing and ageing CF population in the management of their condition. However, any mHealth app developed in this way must be fully personalisable in order to fit the heterogeneous nature of the treatment and man-

CF clinical care is driven by a multidisciplinary team approach. The CF Multidisciplinary Team (MDT) comprises of a mixture of healthcare professionals with varied skill sets to support this multisystem condition. This includes a CF nurse specialist (designated and working full time in CF care), CF physiotherapist (designated and working full time in CF care), and CF dietician (designated and working full time in CF care). The team is supported by a respiratory technician (with a commitment to CF) and psychologist. The MDT is medically-lead by a respiratory specialist with an interest in CF. The respiratory physician/specialist is

The CF MDT at the Cork University Hospital includes: three CF nurse specialists (>30 years collective full time experience in CF care), one dietician (>10 years full time experience in adult and pediatric CF care) one senior physiotherapist (>5 years full time experience CF care), one respiratory technician (>20 years full time experience), and one CF consultant with 10 years as the director of the Cork unit and 10 years' experience in other leading centers both nationally and

This multidisciplinary team supports the second largest CF center in Ireland with over 180 adult CF patients. The Cork CF multidisciplinary team also lead CFMATTERS; an international multicenter consortium exploring antibiotic thera-

A patient passport is described by the National Quality Forum (NQF) and Health Service Executive (HSE) as a paper-based system which provides immediate and important information regarding a patient's health or condition to medical professionals [11, 12]. This passport system is implemented for a number of reasons, such as improved patient experience, improving the speed that care is delivered,

An example of such a passport can be seen for asthma management in the research conducted by Newell et al. [13]. The paper-based passport as presented in this research is developed to store pertinent medical information that an asthmatic would require to receive care on entering an emergency room. Newell et al. found that patients would often experience more fear and stress in this situation as responding medical professionals may ask the patient to repeatedly speak to gain an understanding of this patient's condition, or leave the patient alone so that they can source the information. The paper passport solution is designed to be small and convenient to carry (the size of a credit card) and can provide medical professionals

pies in CF [10]. In addition to this, the research team includes a dedicated medical-multimedia research specialist who works directly with the MDT.

and as a solution for those patients with learning disabilities [11, 12].

**1.2 Patient passports definition and review**

also supported by a lung-disease research/specialist registrar [9].

In this chapter we will discuss the design and development of a patient passport mHealth app for CF adults; from ideation to app-store release. This chapter will first begin by introducing the CF unit responsible for its development, before discussing patient passports. Following this, the chapter will introduce the development of this mHealth app which follows the mHealth Design Pipeline as

agement of CF.

internationally.

**106**

presented by Vagg et al. [8].

**1.1 Cork CF multidisciplinary team**

*Cystic Fibrosis - Heterogeneity and Personalized Treatment*

the medical data needed to treat the patient immediately [13]. Another example of these paper-based passports can be seen in the research carried out by Barber et al. [14]. This passport was developed as a medication aid and allowed geriatric patients to record and review their medications and dosages. The researchers found that this system empowered patients to be more in control of their medication and also acted as a mechanism for the patient to communicate and discuss their medications more confidently with their medical team [14].

Patient passports have also been created for other long-term conditions, such as diabetes. Similar to other chronic conditions, diabetic patients must meet with various members of the multidisciplinary healthcare team. For diabetic patients, passports can be beneficial as they allow the patient to record medical data received from each member of the diabetes multidisciplinary team [15]. In this way, passports bridge a communication gap between patients and these various multidisciplinary members [15].

When researching "CF Patient Passports", only two bodies of work were found. The first was a book titled "The Cystic Fibrosis Passport" by Fitzgerald, which aims to aid family members in understanding the needs of children with cystic fibrosis, and to serve as a practical guide to those who care for these children [16]. The second was a quality improvement initiative taken by the Stanford CF Center, which presented a paper-based system that used a passport-sized document containing instructions on how to care for a patient with CF [17]. The document could be presented by a CF patient to a hospital or clinic to ensure the correct measures are taken to avoid potential issues with infection and crosscontamination. Although both passports are important for the care of CF, they do not include features common to long term condition passports as they do not facilitate self-reported medical data that is accessible to patients at all times.

In addition to paper-based CF passports, a search was performed for digital CF patient passports on both the Google Play and iOS mobile App Stores. From this search, only one app was found that allows CF patients to record their medical data, similar to a passport; "CF View" [18]. CFView is an app which was created by "CF Ireland", a CF charity in the Republic of Ireland. The app allows patients to view medical data that has been collected regarding their condition; however, it does not allow patients to enter or save data. In addition to this, CF patients can only use this app if they are part of a CF registry in Ireland, Denmark or Slovenia, and have been issued with an account by that registry. From the findings of the paper based and digital based search, it would appear that there is no freely or publicly available CF patient passport system that allows patients to record basic medical data. Considering the benefits of a patient passport, it can be stipulated that such a tool would be beneficial to adult CF patients.

#### **1.3 Possible issues with patient passports**

The previous section outlines cases where patient passports have been used advantageously for patients; asthma patient information, diabetic patient information, medication aid. However, patient passports can also present other challenges which may lead to low adoption rates and minimal impact on patient experience. To investigate this further, Dijkstra et al. interviewed diabetic patients and medical professionals to understand their experience of implementing the passport into their current care system [19]. Concerns expressed by the patients were predominantly focused on security, forgetting the passport, being over encumbered, and need for additional time to enter information into the passport. For security, patients were concerned of the ramifications of losing the passport and the threat

this may have on identity theft. Furthermore, some paper passports can be the size of a small A5 copy and cannot fit into a pocket easily. For this reason, patients expressed concerns with forgetting to bring the passport to clinical appointments and also friends or work colleagues seeing or finding the passport. As for time, patients felt that entering information into the passport could often take away from the valuable time they had with their healthcare team [19].

"New Research Developments" (55%), "Medication" (55%), and "Physiotherapy" (47.5%) are the areas of most interest to the participants, followed by "Diet" (42.50%), "Monitoring" (40%), "Social Networks" (40%), "Self-Psychological Help" (37.50%), "News" (32.50%), "Education" (27.50%), and "Management"

Further questions were presented regarding specific features within mHealth applications. 85% of participants agreed that they would like to receive notifications from the app, such as reminders to take medication or next clinical appointment. When asked would the participant play a game to support their CF, the results were more dispersed; 32.65% agreed they would play a game, 34.69% reported they would not and 30.61% were unsure. Ten of the 49 participants reported as being part of a clinical trial currently or in the past. Six of these 10 participants reported that an mHealth application would have been of use to this trial for data collection

A series of questions regarding the collection of personal medical data was then

presented. When asked if their CF medical information, such as genotype and medical history, is difficult to remember, 32.65% of participants regarded this information as difficult and 42% regarded this information as easy to remember. 26.5% of participants agreed they would record their medical information in a mHealth app. 46.9% agreed they would store this information if the mHealth app is password protected and 16% (n = 8) agreed they would if the mHealth app is password protected and does not have access to the internet. One participant reported being unsure to recording their medical data. Each participant was then given the option to further explain their reasoning for choosing their security

(20%). One patient reported *"None"* for this question.

*Designing Heterogeneous-mHealth Apps for Cystic Fibrosis Adults*

*DOI: http://dx.doi.org/10.5772/intechopen.85512*

preference. These results are listed below.

• *Yes: If password protected*

◦ *"Security is priority"*

◦ *"Privacy Matters"*

◦ *"Security Issue*"

• *Unsure*

**109**

◦ *"Only available to me and no online servers"*

◦ *"As long as it is stored on a secure database"*

• *Yes: If password protected and does not connect to the internet*

*cautious about who else could access it"*

◦ *"It is personal and private info"*

◦ *"It would be very helpful/useful to store the data for myself but I would be*

◦ *"It is personal information and so it would need to be very secure"*

To note, two additional answers were submitted for "*Yes: If password protected*"; however, these answers were specific to the perceived usefulness of such

or self-reporting.

When interviewing medical professionals Dijkstra et al. found that often there was no clear agenda for the passport and how it would be of benefit to patient selfmanagement. Consequently, it was unclear at which stage a passport should be introduced formally to a patient to ensure they know how to use it sufficiently. Moreover, there are discrepancies over who is responsible to manage the passport, if it is of benefit to medical professionals, and how this passport can be implemented seamlessly to the current healthcare system [19].

## **2. Patient mHealth survey**

The General mHealth Design Pipeline [8] first suggests gathering insights from key stakeholders to mHealth applications (patients and medical professionals). As such a survey is conducted with CF adult patients from the Cork University Hospital to include their insights before developing a written report with medical professionals. To evaluate if CF adults would find an mHealth app beneficial and to determine what aspect of patient education and patient management that is of interest to CF adult patients, an 18-part multiple choice survey was created and validated over a series of three formal meetings with the Cork CF multidisciplinary (see appendix). Participation in this survey was voluntary, and the inclusion criteria for this survey were that participants were 18 years old or older and owned a smartphone. Surveys were offered to all patients attending their designated outpatient appointment over a 4 week period at the CF Day Ward in Cork University Hospital. Ethical approval for this survey is obtained via the Clinical Research Ethics Committee in University College Cork. During the study period, 49 eligible patients completed the survey; no patients opted-not to complete the survey. The collected survey data was anonymized, and the only clinical information collected in this survey was that the participants have CF and are attending the Cork CF center.

#### **2.1 Survey results**

A total of 49 completed surveys were analyzed. Of the 49 participants, 55% of respondents use an Android smartphone and 40% use an iPhone. It was reported that 38% of participants have a mHealth app installed on their smartphone device such as exercise trackers or calorie counters; however, only 10% (n = 5) know of or are aware of an app which targets CF. Those CF focused mHealth apps identified by the participants are "CF MedCare", "MyFitnessPal", "CFMATTERS STUDY INFO", and "CF View". Two of the five participants reported having a CF app installed on their phone (CF View and CF MedCare). The remaining 44 participants who do not know of any CF apps or have a CF app installed were then asked to explain their answer. Of the 44 participants, 20 patients reported being unaware of the existence of CF apps; "*I don't think there is one",* and three advised that they are not interested in a CF app; *"Not Interested".*

The participants are also given the option to choose multiple aspects of their CF that they would like targeted by a CF mHealth app. To note, the participants could choose as many of these options as applicable. It was found that

#### *Designing Heterogeneous-mHealth Apps for Cystic Fibrosis Adults DOI: http://dx.doi.org/10.5772/intechopen.85512*

this may have on identity theft. Furthermore, some paper passports can be the size of a small A5 copy and cannot fit into a pocket easily. For this reason, patients expressed concerns with forgetting to bring the passport to clinical appointments and also friends or work colleagues seeing or finding the passport. As for time, patients felt that entering information into the passport could often take away from

When interviewing medical professionals Dijkstra et al. found that often there was no clear agenda for the passport and how it would be of benefit to patient selfmanagement. Consequently, it was unclear at which stage a passport should be introduced formally to a patient to ensure they know how to use it sufficiently. Moreover, there are discrepancies over who is responsible to manage the passport,

The General mHealth Design Pipeline [8] first suggests gathering insights from key stakeholders to mHealth applications (patients and medical professionals). As such a survey is conducted with CF adult patients from the Cork University Hospital to include their insights before developing a written report with medical professionals. To evaluate if CF adults would find an mHealth app beneficial and to determine what aspect of patient education and patient management that is of interest to CF adult patients, an 18-part multiple choice survey was created and validated over a series of three formal meetings with the Cork CF multidisciplinary (see appendix). Participation in this survey was voluntary, and the inclusion criteria for this survey were that participants were 18 years old or older and owned a smartphone. Surveys were offered to all patients attending their designated outpatient appointment over a 4 week period at the CF Day Ward in Cork University Hospital. Ethical approval for this survey is obtained via the Clinical Research Ethics Committee in University College Cork. During the study period, 49 eligible patients completed the survey; no patients opted-not to complete the survey. The collected survey data was anonymized, and the only clinical information collected in this survey was that the participants have CF and are attending the Cork CF center.

A total of 49 completed surveys were analyzed. Of the 49 participants, 55% of respondents use an Android smartphone and 40% use an iPhone. It was reported that 38% of participants have a mHealth app installed on their smartphone device such as exercise trackers or calorie counters; however, only 10% (n = 5) know of or are aware of an app which targets CF. Those CF focused mHealth apps identified by the participants are "CF MedCare", "MyFitnessPal", "CFMATTERS STUDY INFO", and "CF View". Two of the five participants reported having a CF app installed on their phone (CF View and CF MedCare). The remaining 44 participants who do not know of any CF apps or have a CF app installed were then asked to explain their answer. Of the 44 participants, 20 patients reported being unaware of the existence of CF apps; "*I don't think there is one",* and three advised that they

The participants are also given the option to choose multiple aspects of their CF that they would like targeted by a CF mHealth app. To note, the participants

could choose as many of these options as applicable. It was found that

the valuable time they had with their healthcare team [19].

*Cystic Fibrosis - Heterogeneity and Personalized Treatment*

if it is of benefit to medical professionals, and how this passport can be

implemented seamlessly to the current healthcare system [19].

**2. Patient mHealth survey**

**2.1 Survey results**

**108**

are not interested in a CF app; *"Not Interested".*

"New Research Developments" (55%), "Medication" (55%), and "Physiotherapy" (47.5%) are the areas of most interest to the participants, followed by "Diet" (42.50%), "Monitoring" (40%), "Social Networks" (40%), "Self-Psychological Help" (37.50%), "News" (32.50%), "Education" (27.50%), and "Management" (20%). One patient reported *"None"* for this question.

Further questions were presented regarding specific features within mHealth applications. 85% of participants agreed that they would like to receive notifications from the app, such as reminders to take medication or next clinical appointment. When asked would the participant play a game to support their CF, the results were more dispersed; 32.65% agreed they would play a game, 34.69% reported they would not and 30.61% were unsure. Ten of the 49 participants reported as being part of a clinical trial currently or in the past. Six of these 10 participants reported that an mHealth application would have been of use to this trial for data collection or self-reporting.

A series of questions regarding the collection of personal medical data was then presented. When asked if their CF medical information, such as genotype and medical history, is difficult to remember, 32.65% of participants regarded this information as difficult and 42% regarded this information as easy to remember. 26.5% of participants agreed they would record their medical information in a mHealth app. 46.9% agreed they would store this information if the mHealth app is password protected and 16% (n = 8) agreed they would if the mHealth app is password protected and does not have access to the internet. One participant reported being unsure to recording their medical data. Each participant was then given the option to further explain their reasoning for choosing their security preference. These results are listed below.

	- *"Security is priority"*
	- *"Only available to me and no online servers"*
	- *"Privacy Matters"*
	- *"As long as it is stored on a secure database"*
	- *"It would be very helpful/useful to store the data for myself but I would be cautious about who else could access it"*
	- *"It is personal information and so it would need to be very secure"*
	- *"It is personal and private info"*
	- *"Security Issue*"

To note, two additional answers were submitted for "*Yes: If password protected*"; however, these answers were specific to the perceived usefulness of such an mHealth application and not their rationale for their security preference and hence negated from the above list. The two submitted answers include: "*Handy if required when travelling/emergencies*" and "*It would help to track what might have been working at the time to maintain lung function (e.g. meds/physio)*". In a follow up question specific to the usefulness of such an application, 87.5% of participants reported that they would find it beneficial to have access to their medical data through an mHealth app. Of the 49 participants 67.35% agreed that an mHealth app that recorded their medical data would be useful and 61.22% confirmed they would use an app to record this data.

**3. App design**

**3.1 Considerations from similar passports**

*DOI: http://dx.doi.org/10.5772/intechopen.85512*

*Designing Heterogeneous-mHealth Apps for Cystic Fibrosis Adults*

port at clinical appointments.

**3.2 Considerations from MDT meeting**

The issues with patient passports, as listed in the Section 1.3, pertain to diabetes passports only; however, these problems are transferable. As such, they have been considered in the design of the adult cystic fibrosis passport. Firstly, by deploying the CF passport as a mobile app a number of these pitfalls may be resolved. When considering the concerns the patients expressed for security and the possibility of identity theft, an mHealth passport can be secured via a username and password. Furthermore, if the phone was lost or stolen, all passport data will be encrypted and not easily accessible. As the passport will be in a digital form on a smartphone, issues regarding the patient being over encumbered or finding it difficult to carry the passport on their person are removed. Furthermore, as the data entered into the mHealth passport is minimal, there will be no smartphone memory usage issues. Finally, as the passport will be in an mHealth form, it is unlikely that a patient will forget their smartphone and subsequently reduces the risk of forgetting the pass-

The remaining issues, as highlighted by members of the diabetes healthcare team, were discussed with cystic fibrosis nurse specialists at the Cork University Hospital. The below discussed solutions were work shopped and agreed upon by consensus before being implemented into the app design. Firstly, identifying the point of care the app should be introduced was considered. In the current healthcare model, the passport shall be introduced to patients who have just transferred from pediatric to the adult orientated facility. However, the app can also be introduced to existing adult patients. During this introduction, a CF nurse specialist will explain the aim of this app and why it will be of use to the patient, the data that can be entered into the passport, and when/how to use this app when meeting members of their healthcare team. The nurse will then assist the patient in entering data that can help set up their profile in the app (e.g. contact information for their healthcare team, genotype). The patient will then be made aware that all data entered into the app is voluntary and cannot be viewed outside the app. The nurse will also explain

to the patient that the patient is responsible for entering data into the app.

can enter the information during this free time instead.

**111**

Finally, concerns surrounding time to enter information into the passport was discussed. In Ireland, An adult CF clinic appointment can last approximately 1 hour and 15 minutes. During this clinic, patients meet each member of the MDT. The first member of this team is a CF nurse specialist who will encourage the patient to enter the data into their passport while the nurse enters the data into their patient file. Between meeting each member of the MDT there is approximately 15 minutes of free time. Therefore, if similar to the diabetic patients, the CF patients feel as though they would prefer to spend the time with the medical team member, they

Considering the benefits of a patient passport and the patient insight provided

by the Patient mHealth Survey, it can be stipulated that such a tool would be beneficial to adult CF patients. Hence, this research will develop and evaluate a patient passport targeted at adults with cystic fibrosis. However, unlike the aforementioned passports, the proposed passport will be developed as a mobile application. The agenda for this app is to provide CF adults with their basic medical information and also to allow them to record their medications, along with medical

Two questions were also posed regarding travel and admission to the accident and emergency department in a hospital to determine scenarios in which the recording of medical information would be of benefit (similar to other passports as discussed earlier). 75.5% of participants reported having gone travelling outside of Ireland and only 12 participants have had to visit a hospital emergency room due their CF. When the participants were asked if they would use a CF mHealth app if created, 67.5% said yes; however, 27.5% were unsure.

Lastly, the participants were given the option to share what they felt a CF mHealth app should target. Twenty three participants suggested mHealth apps which can be categorized under three headings; Management, Support, and Information. Sixteen participants suggested management apps to track and store their medical information to aid in self-management of the condition. Examples of this category include *"Medication taken/taking"* and *"Medical Info i.e weight lung fx exercise + diet plans"*. Six participants suggested apps that can access medical information such as drug names and new treatments or research. An example of this category includes *"Proper medical names of meds"* and *"New treatments"*. Lastly, five participants suggest apps which can allow for support among CF patients, similar to social networks; *"Experience/Information sharing between other patients".*

#### **2.2 Survey discussion**

It is noted that slightly more patients own an Android device; however, the number of iPhone owners was still high. The first observation to note from the survey results is the paucity in awareness of CF apps. Only five patients reported being aware of CF mHealth apps, and only two patients have these apps installed. To note one of the apps, "MyFitnessPal", which was regarded as a CF specific mHealth app, is not. This app does not target any specific cohort and includes personalisable goal setting, such as weight gain, weight loss, weight maintenance. When questioned further this seemed to be primarily due to being unaware of such apps; *"I don't think there is any".* However, despite this lack of awareness, the CF adult participants still demonstrated interest and expectations on what a CF app should focus on. New Research Developments, Medication, and Physiotherapy focused apps were of the most interest to these participants. Additionally, tracking medical data and receiving alerts or reminders were the most popular features.

It is important to note that the participants demonstrated concerns regarding data security and as such any mHealth app created for these patients will need to be fully transparent *i.e* full disclosure on what data is being collected, who is it being used/viewed by, and the security measures in place.

Personalizing educational content in this way is synonymous with patient management mechanisms and interventions, as the multimedia is educating the patient on their medical condition data or personal symptoms. Examples of patient management interventions include: audio tapes, booklets, patient credit card/patient passports, counseling, exercise sessions, individual plan/goal setting, manuals, videos, and lectures/talks [20].
