Many patients are taking a growing stake in their own health management. Just as we, as marketers, got to grips with the influence of the internet, and the phenomenon of patients visiting their doctor with reams of paper printed from medical websites, then along came web 2.0 and, with it, health 2.0: a “read-and-write web”, focused on sharing of content, blogs, communities and social media, transforms the HCP into an ‘advisor on patient health’, with a more empowered patient increasingly sharing details of their health online for comment and feedback. Many commentators are now talking in terms of web 3.0, which can be defined as the “portable, personal web”. The growth of smartphones and an explosion in health APPs are giving patients an even greater opportunity to self-monitor, share medical data and self-diagnose.
This shift is altering the way many think about their personal medical history- historically regarded as a private record, shared only with the limited number of doctors and health professionals managing patient care. Doctors are, quite rightly, taught the importance of privacy and maintaining trust with their patients. As stated by the UK General Medical Council (GMC) in their own document about confidentiality: “..without assurances about confidentiality, patients may be reluctant to seek medical attention or to give doctors the information they need in order to provide good care”.
There have been concerns for a number of years now about how the explosion in information technology could jeopardise patient confidentiality. A review commissioned by the NHS in 1997 resulted in the Caldicott Principles for the sharing and management of identifiable patient data.
In the UK, patient data confidentiality is back on the news agenda. Next year, the new Health and Social Care Information Centre (HSIC) will start collecting patient data from GP practices as part of the care.data programme. Patients can opt out of the programme although, to date, communication about the initiative has been poor. Responding to complaints, the NHS has recently announced a publicity campaign to advertise the programme (and how to opt out) to 22million households in England.
There are many good reasons why patients should fiercely protect the privacy of their medical data. It is everybody’s right to keep a medical condition confidential, whether to protect friends and family or just out of personal preference. There are also sensitivities over employers or health insurance companies accessing data. However, a society that is increasingly used to sharing information about themselves on social networks is starting to see the benefits of sharing their medical histories: benefits both to themselves and to the population as a whole.
These benefits may be most acutely apparent to individuals with rare diseases.
Earlier this year the website www.crowdmed.com was launched. Patients complete a questionnaire, which collects information regarding their symptoms, medical history, family history, basic demographics, medications, and lifestyle. Once a case is submitted, CrowdMed invites hundreds of Medical Detectives (“MDs”) to recommend potential diagnoses and bet on the ones they think are most likely. CrowdMed’s patented prediction market technology harnesses ‘the wisdom of crowds’ and provides patients with a short list of the most likely diagnostic suggestions to discuss with their doctor.
It’s early days and, judging by the website, uptake has been quite slow. In addition, one might question the ‘wisdom’ of allowing anybody to register as an “MD”, even if they have no medical training whatsoever. However, it is easy to see how, with enough physicians registered and a progressively refined algorithm, this approach could be a powerful way to diagnose rare diseases.
Sharing can also benefit patients with more common conditions. All too often, treatment decisions are far from clear cut and the old approach of doing “just what the doctor ordered”, based on the view of a single healthcare profession, is regarded by many as out-moded. Whether considering daily medication like statins, aspirin or a proton pump inhibitor, weighing up the pros and cons of long-term HRT or assessing the risk-benefit of undergoing a surgical procedure, healthcare decisions are frequently nuanced and often ultimately down to the individual judgement of the patient [there are some great examples on the website for the current BBC series Trust Me I’m a doctor http://www.bbc.co.uk/programmes/p01dgd9c/clips].
“…we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. …..Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors”
The data that patients can share on social networks also now extends far beyond that which is traditionally captured in a health record. Self-monitoring, facilitated by mobile APPs and other electronic devices like watches, is taking off in a big way. Many patients now collect personal data on a wide range of health indicators including blood sugars, blood pressure, mood, pain, weight, height, heart rate, food intake, drug compliance, all of which can be shared with fellow patients and HCPs on specialised social networks.
From the perspective of the healthcare marketer, all of this sharing, monitoring and collaboration makes for a far more empowered patient taking an active role in the management of their condition. This presents a problem in most markets, like the UK, where direct to consumer (DTC) promotion of clinician-initiated medical interventions [from in vitro diagnostics (IVD), CE-marked medical devices and foods for special medical purposes (FSMPs) through to pharmaceuticals) is either prohibited or discouraged. There is a strong case against introducing DTC, but in an increasingly digitally connected world where clinical decisions are made in a collaborative way between informed patients and HCPs, current regulations and voluntary codes, often country-specific, dictating how companies can interact with patients, are often no longer fit for purpose.