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Managing expectations: Hype v. Hope
With modern-day medicine going the way it is - new developments, great science, the advent of personalised medicine and more - there’s little doubt that healthcare can move in the right direction if everything is put in place to allow it to do so.
There are, of course, plenty of barriers to integrating personalised medicine into the EU’s healthcare systems, but perhaps one of the most surprising is a lack of willingness to buy-in to the incredible advances by those who have most to gain down the line.
Personalised medicine has brought with it high expectations, but these can never be realised until every stakeholder at every level in the bench-to-bedside process accepts that a way has to be found to move healthcare forward.
Patient satisfaction with healthcare they receive is seen as an important health outcome, although quantifying this is complex. Meeting a patient’s expectation of the care they will receive has an important impact on this satisfaction, but the expectation has to be realistic, neither too high nor too low.
One would hope that many patients would expect a better outcome through a targeted approach (and that this could be delivered) but there are many reasons why patients, medical professionals, healthcare planners, industry, scientists and even researchers may not find it easy to, or even want to, adapt to new approaches.
Patients, although being more aware of their own health issues and potential treatments than at any other time, may be reluctant to talk freely about their concerns (this is, of course, a two-way street, or should be), travel to suitable clinical trials or they may just be plain nervous about innovative treatments.
Front-line healthcare professionals, for their part, often find it difficult to identify the patient’s real needs, given that they may not know (or ask) enough about their lifestyle, work environment, support network and more.
Not only this, but many older doctors will prefer to stick to the tried-and-trusted methods even when they know that better treatments and/or medicines are available. On top of this, even if they do know about better treatments, or the availability of suitable clinical trials, there may not be the resources available to them.
Finally, many are simply not trained to keep up-to-date with new methods.
The times and technologies are moving so fast that even healthcare planners can be caught unawares and, anyway, they are often stymied under HTA systems that mean that new drugs, quite rightly of course, have to be tried and tested for safety and efficacy and thus can take many years to get to the market.
Planning ahead in fast-changing times is not easy in any profession and certainly a tough ‘ask’ in the healthcare arena.
Industry relies not only on workable incentives (they invest millions) but also upon scientists and researchers. The latter can only work with the tools that they are given and the difficulties in accessing Big Data for medical purposes have been well documented.
They also need to be kept up-to-speed in these changing times and can be reluctant to move past the methodologies they have used in the past and learn about new ones. Industry, as the umbrella, also has an problem with producing new drugs for smaller markets - rare cancer sufferers, for example - as the chances of them getting their money back under the current systems are slender without charging high prices.
This, in turn, leads to a lack of take-up of the drugs by healthcare systems across the EU.
One of the best ways to manage expectations when it comes to the doctor/patient relationship and interaction is better communication. As alluded to earlier, patients are demanding to become more-and-more involved in their own treatments. They are using the internet a great deal but health literacy, generally, could still be improved, either via the EU or directly within Member States.
Bottom line, in the age of personalised medicine it has become clear that neither the patients nor the healthcare professionals (HCPs) still know quite enough. The same holds true for regulators and policymakers.
More understanding at every level will bring about greater awareness of stakeholder issues and will inevitably lead to better regulation and legislation from on high.
All HCPs in close contact with patients or their families need to possess a solid knowledge of the current aspects of personalised medicine and its latest breakthroughs, in order to better understand their patients’ concerns.
Clearly, even highly qualified healthcare professionals cannot be expected to adapt to new ways of approaching patients and coping with new technology unless they are suitably trained.
They are being asked to move beyond traditional reactive medicine towards proactive healthcare management, employing screening, early treatment, and prevention, and to classify and treat diseases in a new way, interpreting information from across sources that blur the traditional boundaries of individual specialties.
Even once that is achieved, this new knowledge has to be communicated effectively to a patient who wants to know his or her options, may seek a second or even third opinion and most certainly doesn’t want to be patronised in any way.
This goes way beyond HCPs having a good ‘bedside manner’. They need to be able to understand their patient and also get their charge to understand the issues. Often patients don’t ask the right questions, or any questions at all.
Essentially, front-line HCPs’ communication skills with patients will need to be developed and it is equally important to develop training for the many other professionals whose disciplines are essential to the successful development of personalised medicine – in bio-informatics, statistics, mathematical modelling, and so on.
The first step on the road to managing expectations is to understand them.Author: Denis Horgan