Interview: Dee O'Sullivan, PatientView
Dee O’Sullivan is Director of PatientView and myhealthapps.net and spoke at this year’s European Respiratory Society Presidential Summit this month. In this interview, she offers an overview of her work and discusses the roles ehealth and mhealth can play in healthcare.
Could you introduce your main area of work?
PatientView is a UK-based research and publishing consultancy. It has been surveying patients on their perspectives on health and healthcare since 2000 and now has the capacity to reach out to 120,000 patient organisations around the world, across 1,000 health topics. The surveys cover a broad range of topics from disease-specific care to patient perceptions of the pharmaceutical industry, and what they want from health apps and mobile health services. The results are analysed and published as reports and white papers and debated at multi-stakeholder events with the aim of getting the patient voice into healthcare decision-making. PatientView also carries out commissioned research – for example, on behalf of the European Commission.
What are the main aims of myhealthapps.net?
Myhealthapps.net is a free portal designed to help patients, their families and carers, and the general public find health apps which have been tried and recommended by patient groups. The site was launched in November, 2013 in response to questions we received about health apps – how to find and identify those that are relevant and can be trusted out of the thousands available on the market (now estimated at 125,000).
We mapped the health apps that had already been tried and recommended by patient groups, initially in Europe only, and published the first European Directory of Health Apps in 2012, which was launched at the European Health Forum Gastein. We then surveyed patient groups worldwide on which apps they found useful for their particular condition(s) and what they wanted from a health app so we could devise a common rating system.
Since then we have carried out further global surveys (2014) into what patients want from health apps but are not finding. Based on the results, we held a workshop in London in November 2014, in conjunction with Health 2.0 Europe, to bring together all stakeholders to try and define key concepts for apps in the main disease and therapy areas identified in the survey: cancer, diabetes, disability (focusing on pain management), mental health and wellness.
In what ways can people use apps to improve their health/manage their conditions?
Health apps have the potential to offer support on demand 24/7 – from helping to maintain healthy lifestyles (nutrition advice, better sleep, regular exercise, quitting smoking, etc.), to helping with the daily management of chronic conditions and diseases, such as glucose monitors for diabetes, medication reminders, mood and symptom diaries, environmental alerts (e.g. for air pollution), etc. They can also help to provide support after diagnosis with more information about conditions, the range of treatment options, and which support groups are available, at a time when patients are feeling most vulnerable.
With ever greater pressures on healthcare professionals’ time, we will all have to play a greater role in our self-care, and apps are increasingly playing a part in that. Another advantage of all this data that patients can collect is that it gives clinicians and healthcare professionals a much clearer overview of what is really going on with the patient’s overall health over longer time periods.
What advice would you give to someone about finding and using health apps?
The great difficulty is finding apps which could be relevant to you and it can seem daunting to try and find useful apps just by going onto the app stores. One of the key concerns about using health apps that is regularly cited by patients is trust, but there are lots of sites out there to help you choose, not just myhealthapps.net, but from a clinical safety point of view (e.g. NHS’s Health Apps Library in the UK, or dmdSanté in France), or how accurate the apps are (e.g. Med-Q in Belgium), or on overall safety (e.g. HealthOn in Germany). My advice would be to check organisations that you trust (e.g. a patient organisation, your national healthcare provider, health institutes) and see which ones they recommend. PatientView has also produced a toolkit of the pros and cons of health apps, which is available as a free booklet.
You spoke at the European Respiratory Society (ERS) Presidential Summit earlier this month. What are the main things that you talked about?
I focused on the research we carried out last year into what patients want from health apps but are not finding, and the latest research we are carrying out now among health app developers into what guidance they need from users (patients) in order to address unmet needs and create better quality health apps.
The outcomes of both surveys will be fed into draft guidelines we are drawing up from a user-perspective for better health apps. The guidelines will be two-stage: the first set will cover health and wellbeing, and disability apps, and the second set will cover regulated medical. Both sets of guidelines will be regularly reviewed and updated as the health apps market develops.
How important do you think ehealth and mhealth will be to the future of healthcare?
I think they are already shaping – and will largely define – healthcare delivery in the future. eHealth is mostly led by healthcare systems and healthcare professionals and provides the infrastructure of healthcare, such as electronic health records, telemedicine, medical devices, and hospital data management systems. This is now being supported by mHealth, which has been largely driven by patient demands for more personalised care, with patients using health and wellbeing apps and social networks to take more control and better manage their daily health.
All of this is being driven by well-known financial and demographic pressures. Healthcare systems are in crisis, chiefly because chronic illness is on the rise as populations age. Policymakers realise that without greater patient empowerment and self-care, healthcare systems will no longer be sustainable; and people living with chronic disease largely have to manage their condition alone, on average, more than 99% of the time, according to research from Stanford University.
Is there anything else you would like to add?
Like any period of change, new technologies and innovations are having a profound and disruptive effect on healthcare which can be unsettling for everyone concerned: patients, clinicians, hospitals, industry, insurers and policy-makers. Apps, wearable technologies, and even smartphones are all very recent phenomena, and we don’t know yet how they will develop. All we do know is that the current structures of most advanced healthcare systems are not sustainable from a financial or patient demand point of view, so technology will inevitably continue to play a vital role in transforming how healthcare is delivered.