Apps and PH - Thoughts from the pulmonary hypertension community

Apps and PH: Thoughts from the pulmonary hypertension community Survey conducted August 2024

Apps and PH: Thoughts from the pulmonary hypertension community

Researchers from the UK’s specialist PH treatment centres are exploring whether a custom-designed app might help patients access support and resources and get involved with studies.

To support the exploration, in the summer of 2024 we conducted an online survey amongst our patient community to understand more about app usage, what devices people with PH use, and whether some of the researcher’s ideas would be welcomed.

WHO RESPONDED? 114 survey completions.

60% of respondents were aged 51-70 36% had idiopathic pulmonary arterial hypertension (IPAH) 59% had been diagnosed for more than 3 years

Apps and PH: Thoughts from the pulmonary hypertension community

THE FINDINGS Phones and tablets are used most often by people with PH to access the internet, with the majority of users choosing Apple devices What electronic devices do you use to access the internet? (Respondents were asked to choose all that applied to them) 93% Smartphone 54% Tablet 38% Desktop computer 21% Laptop

Almost a third of people with PH need to ask for help to use online technology at times.

Do you need to ask family or friends for help to use online technology?

6% Yes, often 25% Yes, sometimes 32% Rarely 37% Never

The vast majority of people with PH use apps daily.

57% iPhone (Apple)

How often do you use apps in general? (This refers to all types of apps, including social media, news, banking, shopping etc)

41% Other (including Android)

89% Every day

2% No mobile phone at all

10% A few times a week

What type of mobile phone do you have?

What type of tablet do you have?

40% Apple 27% Other (including Android) 32% No tablet phone at all

1% Once a week or less 1% Never

Reasons given for not using apps: 22% ‘I don’t need them’ 22% ‘I’m concerned about privacy’ 56% ‘Other’

Apps and PH: Thoughts from the pulmonary hypertension community

75% of respondents said they currently use a healthrelated app related to medical, fitness, nutrition, general health, or mental wellbeing. Of these people, half (49%) use one every day 93% of respondents said they would be ‘very likely’ or ‘likely’ to use an app dedicated to pulmonary hypertension support and resources.

When asked why they might not want to use this type of app, 27% cited lack of confidence and 33% cited privacy concerns. Other reasons given included a general dislike of technology or apps, and concerns that it would not be specific enough to them and their condition/s.

More people would prefer an app dedicated to PH, rather than one that incorporated both PH and general health.

54% PH only 40% PH and general health 6% Unsure

Almost two thirds of respondents said they would use an app dedicated to PH support and resources at least a few times a week.

31% Every day 41% A few times a week 10% Once a week 9% Less than once a week 10% Unsure

60% said data security and privacy when using healthrelated apps is ‘vitally important’ to them.

23% said it is ‘important’.

Apps and PH: Thoughts from the pulmonary hypertension community

Almost all respondents said they would be happy with their health data - entered into a PH-related app and stored securely under strict regulations - to be used for research purposes with their permission.

91% ‘I’d be happy with this in order to assist PH research’ 5% ‘I would have some concerns about this’ 4% ‘I’m not sure’

Respondents ranked the following app features in order of importance or usefulness, with the ability to track symptoms coming out top: The ability to track my symptoms The ability to set reminders / manage my medication Access to forums to chat to others with PH Exercise and fitness support Diet advice Opportunities to take part in PH research Psychological support

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Apps and PH: Thoughts from the pulmonary hypertension community

Respondents were asked what other features they may find useful. Answers included: • A feature for connecting / chatting with others affected by PH, such as a forum • Information about PH linked to other conditions • The ability to track improvement or deterioration • Trouble-shooting for IV lines and pumps • A tool to manage personal stock levels of medication and supplies • A way of recording and tracking test results over time • The ability to input or sync workout data • A directory of abbreviations used in PH

94% said they would be willing to complete research surveys via an app, to contribute to pulmonary hypertension research.

91% said they would find it useful to be notified about opportunities to take part in non-survey-based research (such as those at their specialist centre) via an app, and 93% said they would find it useful to be notified of the results of research studies in the same way.

Apps and PH: Thoughts from the pulmonary hypertension community

FREE TEXT COMMENTS INCLUDED: “It’s the way forward, much more trusted than a website.”

“This has the potential to be a really useful resource for people with PH.” “I would not use the app - it is of no interest to me.”

“Just ensure safety and privacy of information online.”

“I am not confident on apps etc so would need it to be fairly simple.”

“I’ve had IPAH for 18 years and think I’m often too late finding out about resources and research-my fault. An app would definitely prompt me to stay current.”

“I think it’s a great idea and allows me to monitor my own health.”

“PH is too specific to individuals and would need medical specialists to create the data.”

“I personally think it’s a great idea, bring it on. The sooner the better.”

“I wouldn’t like an app where you had to use it daily. I don’t want to or need to think about my PH daily so I wouldn’t do anything app-wise that made me do this. I think for me it would have adverse reactions to my PH and my mental health.

93% of respondents said they would be happy to test an app of this nature if it was developed, leaving their contact details for this purpose.

Apps and PH: Thoughts from the pulmonary hypertension community

The next steps…

The findings from this survey and the telephone consultations helped shape a successful funding application for the development of the app. With the grant now secured, work is now beginning on design and it is hoped that the app will be available from the autumn of 2026.

Thank you to everyone who took part in the survey and the telephone-based consultations. If you have any questions about the contents of this report, please email hello@phauk.org

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