Mobile technology and the importance to patients

Dee O'Sullivan, 16 Sep 2015

Healthcare apps are allowing individuals to manage both their health and their illness. It is the basis for sustainable healthcare, suggests Dee O'Sullivan.

Mobile technology is rapidly transforming the ways patients and health-aware citizens manage their own health and wellbeing, as well as their interactions with their healthcare systems. This trend is set to continue, driven by the twin pressures of rising healthcare costs and rising demand from patients for earlier diagnosis, more involvement in treatment choices, and increased home and social care support. Patients want to play a more active role in their healthcare – and, increasingly, will be obliged to do so.

The promise

The big promise of health apps and mobile health services is personalised support on demand 24/7 for patients and carers, particularly for the five major non-communicable diseases (diabetes, cardiovascular diseases, cancer, chronic respiratory diseases and mental disorders) which together account for an estimated 86% of the deaths and 77% of the disease burden in Europe[1].

Using apps and other devices and sensors to regularly capture data - such as vital signs, nutritional intake, exercise, glucose levels, mood changes and sleep patterns - can help patients to better understand and manage their condition(s), recognise and respond to symptoms and triggers, and reduce unnecessary GP visits and hospitalisation. Being able to share these data would allow their doctors, consultants and other healthcare professionals to have a much more accurate picture of their real health over the long time periods in between limited face-to-face consultations.

The potential benefits to patients, healthcare professionals and healthcare budgets are clear, but there are many barriers still to overcome before health apps are fully integrated into patient care and healthcare systems.

Trust and data security

In a global survey of patient and carer groups to find out what they want and need from health apps[2], carried out by PatientView in 2014 in conjunction with Health 2.0[3]  and TICBioMed[4], when asked what would convince them to use an app, the top reason given was having trustworthy and accurate information (69%), with guarantees that their data are safe close behind on 62%.

With an estimated 125,000 health apps now available and increasing exponentially[5], not surprisingly the sheer number of apps was another factor which is preventing their use by patients (cited by 37%), along with suspicion about the app developer (27%) as there is often little or no information about who is behind an app.  To try to address this, PatientView launched the myhealthapps[6] website in 2013 which features only apps tried and recommended by patient and carers’ organisations and provides links to the developer, information on who funded the app, whether it was developed with a medical adviser and if it has regulatory approval (if necessary).

www.myhealthapps.net

From the clinicians’ perspective, lack of evidence about the benefits of apps and concerns about the accuracy of the medical/health content have also contributed to a reluctance by some to engage with apps and support their patients in using them. However, there are many organisations that are evaluating apps from a clinical and safety viewpoint, among them the UK’s NHS Health Apps Library[7], dmdSanté[8] in France, HealthOn[9] in Germany and iMedicalApps[10] in the US.

Ensuring data security and protection was also a key concern raised during the public consultation to the European Commission’s 2014 Green Paper on mHealth[11]. In response to the question ‘Which specific security safeguards in mHealth solutions could help to prevent unnecessary and unauthorised processing of health data in an mHealth context?’ a majority of respondents saw the need for strong privacy and security principles to build users' trust, including data encryption, authentication mechanisms and similar techniques as in the banking/government sectors (eID, digipasses, text message authentication etc).

Overall, the responses from 211 different stakeholders to the public consultation[12] identified seven major areas of concern with mobile health apps that need to be addressed before the technology can go mainstream. These were:

  • the need for clarity on levels of data security to protect public and patients

  • the lack of appropriate governance of lifestyle (non-medical) health apps

  • possible threats to patient safety

  • the lack of transparency about the developers and funders of apps

  • the lack of clinical input and integration with healthcare systems

  • lack of clarity about whether health apps produce positive outcomes

  • the lack of sustainable business models for app development.

Unmet needs

What has been largely overlooked, though - despite the ever-increasing number of health apps on the market - is how many are actually delivering what patients really need? Our global survey[13] found a high level of unmet need across many areas, but five in particular predominated: cancer, diabetes, disability (focusing on pain relief and management), mental health and wellness.

  • Cancer: The key need identified was “an app that provides support in the management of my screening requirements and test results.” This should include functions to track symptoms, keep and organise test results and the ability to share them with all relevant healthcare professionals, book tests where needed, and monitor other key factors such as blood pressure, temperature, sleep, mood and appetite.
  • Diabetes: Despite the plethora of glucose trackers on the market, the priority for diabetes patients is for an “intuitive” app that calculates carb-to-insulin ratios, advises on next best steps and gives clear feedback on how proper maintenance improves patients’ health. This should include: monitoring and analysing how food intake and exercise affect blood sugar levels, enabling easy to enter data, and providing a secure messaging service with doctors/nurses for questions.
  • Disability (pain management): Patients affected by pain wanted an effective pain app diary that provides a support package for pain management, improving on what is already available. This should include trackers for daily activities (such as diet, exercise, mood, fatigue, sleep, medication intake) to help spot trends and triggers, and allow secure sharing of data and advice with and from healthcare professionals.
  • Mental health: The key unmet need identified was for an app that helps patients manage a personal mental health crisis, to include: lifestyle choices relevant to the particular condition combined with a symptom/wellness logger, that ensures that self-monitoring helps deal with problems as they arise, provides emergency contacts and helps carers provide support, as well as having options for online video contact with a mental health professional.
  • Wellness: There was a very broad spread of needs in this area but a common aim was to have an app that provides feedback on how treatment, care and lifestyle changes are impacting on an individual’s health and wellbeing. Functions should include reminders to support better lifestyle choices (such as drinking enough water, nutritional advice) combined with a symptom/ wellness logger, and allow networking with support groups to monitor progress.

Behavioural change

As is well documented, lifestyle behaviours and choices play a critical role in the continuing rise and prevalence of chronic conditions. Public health prevention messages on the dangers of smoking, excessive intake of alcohol, fats and sugars, coupled with insufficient exercise, are well known but too little heeded – even when the consequences are clear. Less than half of patients with a long-term illness take exercise, have a social life, get enough sleep, cope with stress well, eat a healthy diet or look for health information online - according to an April 2014 EU-wide pilot study of patients with long-term conditions and their carers[14]. The survey was carried out on behalf of the European Commission and the Greek Presidency into the attitudes of patients and carers to services in the home (such as mobile phones, the internet, telecare, or personal health monitors) which provide support for independent living, or which communicate with the doctor, nurse or other care professional.

But apps can play a key role in helping to change lifestyle behaviours and maintain improved health. They can provide the options of goal-setting, continual measuring and on-demand messaging to help users overcome temptations to overeat or smoke, plus the ability to communicate with support groups whenever needed to share experiences and reinforce positive actions, with the use of interactive tools to keep engagement high (such as through games). 

Engagement – and therefore adherence – is likely to be higher as the apps have been chosen by patients and citizens themselves. More evidence is needed but there are a number of studies ongoing, including a pilot study that PatientView is currently undertaking with a GP practice, Sycamore House Medical Centre[15], near Birmingham in the UK. The 4,000 patients registered at the practice are being asked by their doctors to try any of the apps on the NHS Health Apps Library or the myhealthapps.net websites and a feedback questionnaire has been jointly devised to detail their experiences.

Lack of integrated technologies

However, even where there is a willingness by patients and clinicians to use apps and share data, often technology issues are preventing them from doing so. Nearly 40% of patients and carers surveyed in the EU-wide pilot study cited above, said that they were not able to keep in touch with their doctors online but 41% would like to. Similarly, just over 50% are not currently able to share data they collect via apps or other monitors with their doctor, nurse or hospital, but one-third would like to. Data systems in hospitals, clinics, GPs’ surgeries and community care centres need to be interoperable with the smartphones and tablets that patients are using.

Other issues that need to be addressed include ensuring:

  • data captured in app is able to be accessed even if that app is no longer supported by the developer, or the user changes device or operating system

  • upgrades by the developer or the app store do not interfere with the data already captured

Sustainable business models

With the cost of developing a health app averaging $100,000, according to the Wireless Industry Partnership[16], it is also essential for developers that they can get a return on their investment, and for patients to know that their favourite apps will continue to be supported and available.

Some apps are already being prescribed and reimbursed by health insurers in Europe, for example, MySugr Companion[17], a diabetes app which has received FDA approval and CE-marking and which is reimbursed in Austria. Apps which demonstrate a health benefit and are cost-effective will increasingly need to be supported by healthcare systems through prescription and reimbursement if patients are to continue to reap the benefits.

Source: What do patients and carers need in health apps - but are not getting?
www.myhealthapps.net/resources

Where next?

There are still many outstanding questions that all stakeholders in the mHealth ecosystem are currently trying to address before the full potential of health apps can be realised. Among them:

1. Data protection

  • What is health data?

  • What would build trust?

2. Data-sharing interoperability

  • How important is this to users?

  • How important is it that data in apps are standardised?

3. Big data

  • Should users know how their data are being gathered and used?

  • Should users decide which of their data they want to share?

4. Legal oversight

  • What do users want?

  • Should law define how personal data in apps are processed and used?

  • Should app developers be required to ensure any claims they make are justified?

5. Liability issues

  • Is there a need for code of conduct among app developers?

  • Should there be guarantees of reliability and functionality?

  • Should app stores be made liable for their content?

  • Who should be liable if patients pass inaccurate medical data to one another?

6. Levels of transparency of the app/owner developer, and their partners

  • How much and what?

7. Incentives

  • What would make public/patients use health apps more frequently?

  • Should they be prescribed by doctors?

8. Health outcomes

  • How tangible should they be?

9. Value for money

  • How important?

10. Levels of governance

  • Should there be quality labels and certification schemes?

  • Should there be a central registry of health apps?

11. Clinical input

  • When?

12. Public and patient safety

  • How should that be protected?

13. Health literacy

  • How can apps be made more readily understandable to the user?

  • Whose role is it to educate users in mHealth?

14. Accessibility

  • How can apps be made more readily accessible to the user?

  • Should government help pay for health and wellness apps?

From our research and multi-stakeholder workshops, we see a disconnect between what patients want from health apps and what developers think they want. More guidance is needed that puts the patient/user at the heart of the process.

To this end, PatientView is currently surveying[18] health app developers on what they need from users in order to create high quality apps that address real needs. The survey is being conducted with Research2Guidance[19] and the App Quality Alliance[20]. The findings will then be shared with patient organisations for their input and the results will be published later in 2015 as part of a process towards drafting user-defined guidelines for developers.

About PatientView and myhealthapps.net

A UK-based research, publishing and consultancy group, PatientView has been collecting and analysing the perspectives of thousands of patients on their healthcare since 2000. It now has the capacity to reach out to 120,000 patient organisations worldwide, covering over 1,000 specialities.

PatientView launched the myhealthapps.net website in November 2013 to provide an independent portal for patients, carers and health-conscious consumers to find apps that have been tried, tested and trusted by patient and health consumer groups. Over 650 patients’ organisations around the world have so far contributed reviews of health and wellbeing apps to myhealthapps.net. A full list of current reviewers can be found on www.myhealthapps.net/reviewers.

Many partners support the site (commercially and non-commercially) and have partnered with PatientView on related research initiatives, including the App Quality Alliance, Digital Health and Care Alliance, European Connected Health Alliance, European Health Forum Gastein, Global Accessibility Reporting Initiative, GSK, Health 2.0, Janssen, NHS Health Apps Library, Research2Guidance, techUK, Telefonica and TICBioMed.
www.patient-view.com
www.myhealthapps.net

 

References

[1] World Health Organization Europe: http://www.euro.who.int/en/health-topics/noncommunicable-diseases

[2] Survey conducted between June and October 2014: 1,130 respondents from 31 countries. Results analysed in a white paper, What do patients and carers need in health apps – but are not getting? Available to download from www.myhealthapps.net/resources

[3] www.health2con.com

[4] www.ticbiomed.org/english/

[5] http://research2guidance.com/the-market-for-mhealth-app-services-will-reach-26-billion-by-2017/

[6] www.myhnealthapps.net

[7] http://apps.nhs.uk/

[8] www.dmd-sante.com/

[9] www.healthon.de

[10] www.imedicalapps.com

[11] Green Paper on mHealth, European Commission (published in April 2014):
http://ec.europa.eu/digital-agenda/en/news/green-paper-mobile-health-mhealth

[12] Summary report on the public consultation on the Green Paper on mobile health, published 12 January 2015: https://ec.europa.eu/digital-agenda/en/news/summary-report-public-consultation-green-paper-mobile-health

[13] Survey conducted between June and October 2014: 1,130 respondents from 31 countries. Results analysed in a white paper, What do patients and carers need in health apps – but are not getting? Available to download from www.myhealthapps.net/resources

[14] PatientView study commissioned by the European Commission and the Greek Presidency of the Council of the EU: Survey of patients and carers on the value of services in the home to support independent living and care for people with a long-lasting illness. Pilot study: 500 respondents from 21 EU Member States, April 2014.
https://alexwyke.wordpress.com/2014/05/21/mhealth-improving-accessibility-and-quality-of-life-a-pilot-survey-of-patients-and-carers/

[15] http://sycamorehousesurgery.co.uk/health-apps/

[16] Wireless Industry Partnership: http://wip.org/

[17] http://myhealthapps.net/app/details/359/mySugr-Companion

[18] http://createsend.com/t/j-A7A166479482A41F

[19] http://research2guidance.com/

[20] http://www.appqualityalliance.org/

 

Dee O'Sullivan was a speaker at the Centre's conference Transforming healthcare: Telemedicine, best practice and you.

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Author

Dee O'Sullivan

Director, myhealthapps.net

Dee O'Sullivan is director of myhealthapps.net, a free public portal of health apps reviewed and tested by patient and health consumer groups. It aims to empower patients and the public to better manage their general health and wellbeing and the daily care of their specific conditions. The site was launched in Brussels in November 2013 and is owned by PatientView, a UK-based data, research and publishing consultancy that canvasses and reflects patient perspectives on healthcare. It now has the capacity to reach out to 120,000 patient groups worldwide.

Dee O'Sullivan has over 20 years' experience in the UK and Brussels of advocacy, pan-European stakeholder engagement, strategic communications and media relations, including for the Economist Group, Epposi and MCI Group.

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