The amount of healthcare-related data being produced and stored is only going to grow and patients' expectations are only going to grow along with it. Our access to that information isn't likely to diminish – what does this mean for the patient of the future?
The internet fired a revolution in patient awareness: doctors have become used to seeing patients arrive for a consultation clutching folders full of web print-outs.
More recently, further fronts have opened up in the patient empowerment revolution, inspired by more interactive social media and mobile internet access. “Patient 2.0” – as this new breed is sometimes known – is using not just the web but social media and mobile technologies to build a completely new relationship with their healthcare providers.
The core concept behind Patient 2.0 is someone who connects at home and on the move with friends, family, clinicians and healthcare providers to both access health and care information, and exercise more active control over the day to day course of their care.
Studies over the past two years by the Pew Research Centre in the US1 show that pure information-seeking by patients is well embedded, with 80 per cent of US internet users looking online for health information. But “peer to peer” activity is also on the rise: some 34 per cent of internet users have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog; and 18 per cent of internet users have gone online to find others who might have health concerns similar to theirs. People living with chronic and rare conditions are significantly more likely to do this, the Pew research finds.
With the related rise of mobile technologies such as smartphones and tablets – now ubiquitous in many parts of the world – the world of health information, social media and telehealth or mHealth are coming together, offering the possibility for sophisticated new forms of communication and relationship between doctor and patient.
As Claire McCarthy MD, a paediatrician at Harvard Medical School, wrote recently in The Huffington Post2: “Social media is all about relationships... [and] medicine itself is all about relationships. If you have good relationships with your health care providers, it helps you get better care.”
According to Dr McCarthy, the most common problems she sees in her own young patients are obesity, asthma and school or behavioural problems – all complex problems linked to home life and lifestyle. Accordingly, social media links and mobile links between patients and doctor could be a major boon for successful treatment.
“I can't even begin to do them justice in a 15-minute visit every few months,” she writes. “But if I could be in touch with people regularly, know what's going on and work together with them, I might actually make a difference.” She cites a recent conference talk from another Boston doctor who managed to cut readmissions for congestive heart failure in half simply by having patients check their weight and blood pressure and sending the information in to the health care team, who made any necessary changes with them.
The same potential for mobile technology-driven shifts in the care relationship are being observed in the UK.
Nick Goodwin, senior fellow at the independent health policy charity the King's Fund, says new technologies such as remote consultation and home monitoring of long term conditions have the potential to change the balance of power between doctor and patient, but this is not always a straightforward process.
“I think while doctors have the best interests of patients at heart, some have issues about giving patients more power and control”, Goodwin says. “In an ideal future, patients ought to have access to medical records and some input into what they say – it is our care, after all. But for all sorts of reasons, some in the medical profession would rather keep hold of records and not share them.”
Other challenges include safety and security of information exchange, and the need for patients to feel that technology is not being used to remove them from more direct, hands-on care, Goodwin says. But if systems were set up correctly, these potential problems could be turned into benefits, he argues.
“If technology is used in the right way, it ought to make patients feel more safe and secure and more connected to their healthcare provider, not less connected because it might mean fewer trips to see the doctor.”
This will be achieved partly through patient education and awareness work, Goodwin says – “recognising mobile technology is additional to, not instead of, face to face care”, and also through clinician education and training. Doctors need to be made aware that the appropriate use of technology to empower patients could help them manage service demand, to everyone’s benefit.
“I think doctors would agree with that. They just want to make sure technology use is appropriate. But when consultation time can be less than 10 minutes and demand is growing from patients coming in with more information, technology can help manage demand more effectively," he says. "By allowing some services like appointment booking to take place online and to allow more team-based working led by nurses or community care, it can free up longer consultation periods for those who need it.”
Awareness of the potential of new technologies for patient empowerment among doctors in the UK could be given a boost by new provisions for ongoing professional training. General Medical Council (GMC) guidance in the UK already says that "Good medical practice requires doctors to keep their knowledge and skills up to date throughout their working life.” In 2012, the UK government announced annual appraisals of doctors’ skills and abilities, coupled with five-yearly reviews of whether they are fit to carry on working, known as “revalidation”. This was described by the GMC as “the biggest change in medical regulation for 150 years". The process will include feedback from patients: doctors’ technology awareness is bound to figure.
As Patient 2.0 makes more use of mobile applications for health and lifestyle purposes – anything from heart rate monitors to smartphone apps allowing them to calculate their body mass index – other issues are encountered.
It might be difficult to decide when a certain application on a smartphone or tablet computer should be classified as a medical device, for example, with all the potential regulatory issues that might entail, warns John Cruickshank, a Consultant Director for the think-tank 2020health.
“Regulators understand this issue and they are trying to make sure good controls are put in place without stopping the entrepreneurial spirit that is driving mobile innovation,” Cruickshank says. “Clearly one of the drivers is patient empowerment – if you’ve got a patient who is motivated to look after their health, perhaps because they have a long term condition, the concept of 'Patient 2.0' will really take off.”
Overcoming obstacles to Patient 2.0
Many of the challenges faced by healthcare system in embracing this new model are universal. Two EU-funded projects, for example, are working to collect evidence of patient experiences and perceptions of telehealth to shed new light on what needs to be done to improve user acceptance of these services. These are Chain Of Trust3, where the perspective of end-user groups on telehealth is being assessed for the first time, and RENEWING HEALTH4, examining large scale telemedicine pilots.
The European Patients’ Forum (EPF) is a key player in both projects: “Although well-recognised as both a key driver and potential barrier to of wider uptake of telehealth services in Europe, user acceptance has not been sufficiently considered in discussions around eHealth strategies and policies,” says Nicola Bedlington, EPF executive director.
“If one considers that telehealth relies on technology of the most intrusive sort, acceptance of telehealth often requires that patients be prepared to compromise on same aspects of personal privacy. Evidence from various telehealth studies indicates that, in principle, patients would be quite willing to do so provided that telehealth brings about other benefits to them in terms of improved quality of life, less money spent on healthcare and better quality of healthcare services, to mention just a few.”
Once again, education and awareness are at the heart of what is needed to help ensure the patient is at the centre of care delivery, she says.
“An effective empowerment strategy starts with promoting health literacy to equip patients with the knowledge and skills needed to take an active role in managing their health and healthcare and to enhance productive dialogue between the patient and health professional, leading to better and more cost-effective health outcomes,” Bedlington says. “EPF believes there is a need for an overarching strategy at EU level on high quality information to patients on health, diseases and therapy options.”
Good quality information to underpin patient empowerment: the Patient 2.0 challenge has been thrown down and technology is just a part of it.