Let’s not fool ourselves about the PIP QI

It looks like patient care and quality improvement have taken a backseat in the new Practice Incentive Program (PIP QI).

To be eligible to receive payments under the revamped quality improvement program, practice owners need to show Primary Health Networks (PHNs) that they are recording information such as smoking status or influenza immunisations, and hand over de-identified patient data to their local PHN.

It is important that practices record this kind of information but the requirements are set at a rookie-level – a bit like learning how to write, no, how to hold a pencil.

Not surprisingly, the new program is regarded by many practice owners and managers as ‘easy money’. I don’t blame them as the Medicare freeze has affected us all – but the Federal Department of Health is fully aware it is dangling a carrot in front of a profession in dire need of adequate funding.

It is unlikely that in its current form, PIP QI will improve the quality of patient care. The profession rightly has second thoughts: Is this the beginning of performance management? Is this part of the department’s general practice data extraction plan?

What’s next? As there is no transparent, long-term vision here, your guess is as good as mine. The department is playing its cards close to its chest and appears to be effectively applying salami-slice tactics.

Professional organisations should have been given more responsibility to execute an agreed quality improvement strategy, acceptable to all stakeholders, including custodianship of patient information and access to raw data.

This was however clearly not on the department’s agenda and professional bodies were not successful in reaching agreement on a profession-led solution (general practice needs a shared vision). As a result, the focus appears to have been on data extraction.

After having been postponed twice, the practice incentive program has now been launched, even though several best-practice data governance principles have not yet been met.

For example, practices have been given little insight into what patient data is exactly being extracted from their databases and what happens with it afterward.

Red flags about the scheme have been raised at grassroots level. When going live last week, there were, and still are, many unanswered questions.

The practice incentive program should be about improving patient care in an acceptable, sensible and meaningful way. I’m concerned the scheme will instead be remembered as a government data grab.

Does your screen time make you happier?

A few months ago I moved my phone charger out of the bedroom so the phone is not there when I wake up. I also deleted social media apps from my devices. As a family, we decided to create more screen-free time and space in our lives.

The wifi now switches off automatically at certain times during the day, for example when the kids come home from school, and during homework and meal times – which was really annoying until we got used to it.

The reason for the change was that being connected to the internet 24/7 did not make me happy. Looking at the behaviour of my children after they spent time on their devices confirmed that screen time and happiness don’t often go together.

My wife and I decided that more screen-free time should also be applicable to us. As Robert Fulghum said, “Don’t worry that children never listen to you; worry that they are always watching you”.

Taking this decision was difficult but it was nothing compared to implementing it. Not always having my smartphone nearby created all sorts of challenges, but it was also a new and positive experience.

It is interesting how much you see and hear when you’re not focussed on a screen (or thinking about what you have just read on your device). What is most important to me is that it feels so good. I hope my children will benefit from sitting less often behind screens and spending more time with family and friends.

If you want to learn more about this topic (even though you will have to use a screen to do so…), have a look at the Ted Talk below ‘Why our screens make us less happy’. Apparently, Steve Jobs’ children were not allowed to use an iPad.

In a thought-provoking Conversations podcast, Richard Fidler interviews social researcher David Gillespie about the addictive nature of social media and the teenage brain. Lastly, the website of the Australian eSafety Commissioner contains a wealth of information and tips about having safe and positive experiences online.

How to control the settings for secondary use of your My Health Record data

Now that over ninety per cent of Australians has a My Health Record, we need to start using it. That also means becoming familiar with the dashboard and settings. Most people are not aware that they can control who sees what information in their record.

For example, you have the option to switch off secondary use of data. Secondary use is when third parties use your health information for purposes not directly related to your care.

This includes public health policy development and research – but also many other purposes. If you want to know more, read my blog post about this topic.

When a new MyHR record is created, your data will automatically be shared for other purposes. If you do not want this, you need to click the ‘do not participate’ button.

Unfortunately, this button is not available under the ‘privacy & access’ tab where it should be so it may be hard to find. Look for the button at the bottom of the ‘profile & settings’ tab (see screenshot below).

Secondary use of My Health record data

It is your choice to share or not share your data. There is also a helpful video available with instructions on how to control settings for secondary use of data.

Why external rewards undermine internal motivation

In my last post, I mentioned the issue of lack of trust in institutions. It appears that our world is increasingly running on financial incentives and regulation. Psychologist Barry Schwartz states that this undermines our will to do the right thing.

This week Dr Todd Cameron, GP and practice owner in Victoria, posted an excellent four-minute LinkedIn video about why financial incentives are not as effective as we sometimes think. He mentioned the following issues with financial performance systems:

  • They assume people are lazy
  • They are not supported by scientific evidence
  • They ignore activities that are difficult to measure
  • They reduce the flexibility of organisations
  • They take away resources for system improvement
  • KPIs often work against each other or against other goals, values or purposes
  • KPIs can undermine collaboration.

Research confirms that incentives, big or small, usually backfire. Like punishments, they affect internal motivation and creativity. Social scientist and author Alfie Kohn wrote about the ‘bonus effect’ in Psychology Today:

“When people are promised a monetary reward for doing a task well, the primary outcome is that they get more excited about money. This happens even when they don’t meet the standard for getting paid.”

Kohn states that rewards not only make people lose interest in whatever they had to do to get the reward but incentive systems also reduce the quality of their performance.

I believe Todd is right, money should be the byproduct of doing a great job. Pay is clearly not a motivator to improve performance. Most people get out of bed in the morning because they want to do the right thing – this is usually something we’re good at or passionate about.

Great examples and a work environment that gives people freedom and sets a clear direction at the same time are more powerful than monetary bonuses. Todd recommends that KPI funds should be used to improve systems and collaborative platforms and that targets should not be tied to financial rewards.

What happened to common sense

Last week, at the final meeting of the My Health Record Expansion Program steering Group, we spoke about trust. Or better, the lack of trust people have in big databases, governments in general and many other institutions.

This global trend is described by psychologist professor Barry Schwartz, who says:

“(…) the disenchantment we experience as recipients of services is often matched by the dissatisfaction of those who provide them. Most doctors want to practice medicine as it should be practised. But they feel helpless faced with the challenge of balancing the needs and desires of patients with the practical demands of hassling with insurance companies, earning enough to pay malpractice premiums, and squeezing patients into seven-minute visits – all the while keeping up with the latest developments in their fields.

Schwartz says that we seem to respond to any problem with the same answer of sticks and carrots. There is a widespread belief that more and better rules and incentives will solve our woes. There is one issue. Rules and incentives deprive us of the opportunity to do the right thing. They undermine empathy, creativity and the will to figure out what moral right means.

The My Health record offers great opportunities for healthcare in Australia. However, even though 90.1% of Australians now have access to the My Health Record, this cannot be the end of the line. A system that is responsive, has means to listen to users and learn from errors, mistakes and imperfections, is key to an effective and trustworthy digital health solution into the future.

Kindness, care and empathy are an essential part of my job – and everyone else’s. But it’s unlikely that this will ever be translated into key performance indicators or expressed in My Health Record upload percentages, practice incentive payments or MBS fees.

People are inspired by great examples, not by incentives. Above all, most people want to do the right thing. Trust may be a rare commodity these days but it remains an essential ingredient of effective healthcare delivery. It’s common sense, really.

5 reasons why health providers don’t trust each other

Trust is an essential ingredient of effective healthcare delivery. It’s important for interprofessional as well as inter-organisational collaboration.

A 2018 literature review concluded that collaboration leads to more job satisfaction, improved morale and a better working atmosphere. Unfortunately, health providers don’t always trust each other. The authors of the review found 5 sources of distrust:

  1. Doubting the other’s motivation in providing care and the perceived benefit for him/her
  2. Feeling threatened by the other’s involvement and being afraid of losing some territory
  3. A difference in philosophies and scope of practice
  4. Negative images of the profession
  5. Lack of confidence in the other’s skills and lack of awareness of the other’s role in patient care.

Other ingredients of effective collaboration include adequate communication, respect, mutual acquaintanceship, equal power-distribution, shared goals, congruent philosophies and values, consensus, patient-centeredness and environmental factors.

The authors did not explore the level of importance of each factor but I am putting my money on trust as the secret ingredient. If we continue to distrust each other, collaboration will remain a challenge. The question is, how to change this?

Welcome to the ‘open era’ of health information

“When I graduated, my medical notes were an aide-memoire to help me treat my patients. When I joined a group practice, I realised that my notes helped my colleagues and me treat our patients. Since computerisation, my notes and health summaries have helped me to write better referrals so that colleagues outside my practice can assist me in treating patients more effectively. Now that I can share an up-to-date health summary on MyHR, I realise that my notes can help my patients to achieve better outcomes from the health system, even when I am not directly involved.”

Dr Steve Hambleton, AJGP

Five years ago, in 2014, I wrote about OpenNotes because I thought it was a new and fascinating concept. I soon discovered that giving patients access to health records triggered strong emotional reactions: patients loved it and many doctors thought it was one of the scariest ideas ever.

Fast forward to 2019, and about 90% of the Australian population has access to the national My Health Record (MyHR). According to the Australian Digital health Agency over 80% of general practices and pharmacies, 75% of public hospitals, and 64% of private hospitals have registered.

It took a while, but Australia has sorted out most of the digital teething problems. A large part of what doctors do every day – from writing prescriptions to requesting tests – is now recorded and can be viewed by patients, other health professionals and researchers.

This is only the beginning. Secure messaging is one of the next big topics on Australia’s eHealth agenda. By 2022 patients and healthcare providers can communicate and share more health data than ever before via interoperable, secure digital channels.

Nobody is expecting this to be an easy journey, but I’m looking forward to the destination! Welcome to the ‘open era’ of health information.

WANTED: shared vision for primary care

“I do know that when primary care doesn’t connect, collaborate and work together – patients see and feel that disconnection. And I have a feeling that those working in primary care see and feel it too.

Belinda MacLeod-Smith, health consumer (BridgeBuilders.vision)

Labor’s health spokeswoman Catherine King announced that her party will create a permanent health reform commission if it wins the federal election. I thought this sounds like a step in the right direction as long-term planning of health reform is much needed in Australia.

On the other hand, there have been many government committees, task forces, reviews and reports that haven’t made a dent in the primary care landscape.

If only we could put together some of the ideas coming from Australia’s health and consumer groups. These organisations, often working at the coal face of primary care, have an excellent understanding of the urgent needs and requirements. 

I was pleased to see that some of this year’s pre-budget submissions by primary care organisations contain similar ideas. For example, the pre-budget submissions from AMA, ACRRM and RACGP all argue for funded telehealth services.

As expected, there is a strong push for adequate patient Medicare rebates and reduced patient out-of-pocket costs. The general practice profession also believes that spending more quality time with patients should be encouraged through better remuneration of longer consultations. 

One of the main themes is improving care for people living with chronic and complex conditions. The Australian Medical Association is proposing a chronic disease quarterly care coordination payment to GPs to support team-based care. 

The Royal Australian College of General Practitioners is advocating for comprehensive reform that includes blended funding, based on the Vision for general practice and a sustainable healthcare system.

The Pharmaceutical Society of Australia wants pharmacists in residential aged care facilities. The Consumers Health Forum argues for an Australian Co-Creating Health initiative to support people with chronic conditions to actively manage their own health.

Rural doctors, RDAA and ACRRM, are asking for more junior doctor training places in rural and remote settings and a move to the rollout phase of the National Rural Generalist Pathway.

This is just a selection of some of the budget submissions. What struck me is that there is a lot of merit in many of the proposals. They are often not mutually exclusive.

Unfortunately, most budget submissions seem to end up in a large pile on the minister’s desk. Many great ideas never see the light of day, because there is no sector-driven vision or strategy.

Is this the best we can do? I believe it is time to work towards a shared vision for primary care. Why not start by looking at what the various organisations and groups have in common?

A valuable lesson in ‘less is more’ from a Dutch patient

A few weeks ago one of my patients, Eva, asked about the treatment of urinary tract infections. In the course of our conversation I mentioned that in Australia antibiotics are recommended.

Eva had symptoms of a bladder infection and was after a diagnosis, but preferred not to take antibiotics. She was Dutch and said that cystitis in the Netherlands is often initially managed without antibiotics.

We decided to look it up (it has been a while since I practised in my birth country) and I googled the website of the Dutch College of General Practitioners. I had a feeling Eva was correct, as it was Dutch research that concluded middle ear infections can often be treated without antibiotics. The Netherlands, Norway and Iceland also top the charts when it comes to lowest rates of resistance to antibiotics.

Since 1989 the Dutch GP College has developed about one hundred independent, evidence-based guidelines for conditions managed in primary care. It didn’t take long to find the guideline on urinary tract infections, published in 2013.

Indeed, the document stated (freely translated from Dutch):

“Cystitis in healthy, non-pregnant women can be self-limiting. Leaving cystitis untreated seldom leads to bacterial tissue invasion.

But what is the risk of complications, like a kidney infection, I wanted to know after reading the advice to Eva (who didn’t look surprised at all).

“Apparently it is not very high, doctor,” she answered.

In the endnotes of the guideline I found a reference to two studies, indicating that pyelonephritis in non-immunocompromised, healthy women is rare, with no statistically significant difference in the occurrence of pyelonephritis between antibiotic treatment groups (0 tot 0,15%) and placebo groups (0,4 tot 2,6%).

The document further contained instructions about what to discuss with patients:

“The GP discusses the option of watchful waiting (drinking plenty of fluids and painkillers if needed) and delayed prescribing. The patient can then decide to start antibiotics if symptoms persist or worsen.

Some evidence indicates that, without treatment, 25–42% of uncomplicated urinary tract infections in women resolve spontaneously.

Eva was right about the Dutch approach. In healthy people with uncomplicated infections the Dutch College of GPs recommends consideration of no antibiotics.

Are the Dutch unhappy about a health system that often advises against antibiotics? My patient certainly didn’t seem to be. She was relieved when we decided not to treat her urinary tract infection with antibiotics.

The answer appears to be no. For years the Netherlands has led the Euro Health Consumer Index, which measures patient satisfaction with healthcare systems in Europe – including outcomes, access to healthcare and medications.

On the Choosing Wisely Australia website I found one sentence on the topic: “The management of urinary tract infections (UTIs) is changing, although it can still include antibiotics.” Lack of systematically reviewed placebo randomised trials seems to be a key factor for Australia.

Eva’s urinary tract infection cleared up without antibiotics.

I recommend sensible use of local clinical practice guidelines and treatment recommendations. Always seek timely advice from your doctor regarding any medical condition you may have, including urinary tract infections. For privacy reasons the name and details of the patient have been altered.

Who is the real winner in the latest stoush between pharmacists and doctors?

Last week a state Pharmacy Guild president made a few negative comments about general practice. I thought it was neither here nor there, but what happened next was interesting.

I could not find the original column (admittedly I didn’t look very hard) so I can’t verify his exact words but apparently, he said that increased funding for GPs will only incentivise five-minute ‘turnstile’ medicine.

Most GPs would not have read or been aware of the column until, on the eighth of February, Australian Doctor Magazine, owned by the Australian Doctor Group (ADG), posted an article on their website titled “Pharmacy Guild says GPs working ‘turnstile operations’ filling time-slots with easy patients.”

Then all hell broke loose. There were 170 comments on the article from mostly angry GPs.

A few days later, on the eleventh of February, Pharmacy News published this piece: “Guild takes aim at GPs who favour wealthy, healthy patients”. 

Interestingly, Pharmacy News is also owned by ADG.

Then the response came. On the thirteenth of February a reply penned by the RACGP president was published. And you guessed it, that same day Australian Doctor posted: “Turnstile, cream-skim medicine? RACGP hits back at Pharmacy Guild.”

The ADG publications got hundreds of clicks and views of their website content out of the latest stoush between pharmacists and doctors.

Good on them, one could argue. But hang on, there’s more to it. The ADG website explains how it works:

“We know that GPs are increasingly time-poor and less reliant on [pharmaceutical] sales reps,” says Bryn McGeever, Managing Director of Australian Doctor Group. “They’re looking elsewhere for information.”

“While readership of medical print publications remains strong, digital channels are becoming increasingly popular with almost eight in 10 GPs now reading online medical publications monthly.”

“In recognition of this continuing shift in GP behaviour, Australian Doctor Group last week launched AccessPLUS, a bespoke digital sales channel designed to fill the space left behind as rep engagement continues to fall.”

And the real winner is….

It is sad, but not surprising, that the medical media are fuelling the tensions within primary care. Of course, like other media, ADG is just doing its job. I do wonder how many GPs and pharmacists are aware that they are the product on sale here.

I have had my fair share of altercations with the Pharmacy Guild – but it’s a road to nowhere. I prefer to listen to people like pharmacist Debbie Rigbie, who rightly says, “We must build bridges across our differences to pursue the common good.”

Shared decision-making is more than asking what patients want

Medical students are sometimes surprised that we don’t always follow the guidelines they have learned in medical school and instead use the patient as our guide when making decisions. Shared decision-making involves exploring patient preferences and what is important to them.

This sounds obvious but it’s actually not easy. As I said before in this blog post, I’m not sure I can always answer the 5 Choosing Wisely ‘questions to ask your doctor’, which form the basis of shared decision-making.

Apparently many doctors believe they already do this when they don’t. For example, a survey of US-based health practitioners observed high confidence in the face of limited understanding. There are many myths about shared decision-making (the 2-minute video below explains the most common ones).

Shared decision-making is more than asking what a patient wants. It also includes providing information about the pros and cons of available options, including the level of evidence around risks and benefits of tests and treatments. If I and many of my colleagues find this challenging, how do patients experience it?

Recognising the difference between normal and abnormal

“Would you mind if the medical student examines you as well?” It’s a common phrase in our practice (usually mentioning the medical student’s name too) and the common response from patients is positive. “Yes of course, we’ve all got to learn, don’t we?”

Although they prefer to see diseases, I also try to expose students to as many variants of normal as possible. Normal skin, normal heart sounds, normal ear drums, normal eyes, normal breathing sounds. Interestingly, ‘normal’ has a scale too – there is a wide variety.

Most students love to listen to the fascinating stories patients bring to the consulting room. They appreciate the opportunity to practise their skills on real patients – but it’s not always spectacular.

When the next person comes in with a similar problem I can see the facial expression of the student: why examine all these normal body parts? But I’ve known this patient for a while and there’s something not quite right. The patient and I both suspect it, but the medical student hasn’t picked it up yet because ‘abnormal’ is sometimes only evident when measured against normal.

“Can you feel this?” I ask, “Compare it to the patients we saw earlier.” The student tries again and eyes light up. When they learn the many presentations of normal, students become better at recognising significant deviations from normal.

Defining normality and abnormality can be challenging, even for experienced clinicians. Being able to make the call that something is a variant of normal is as valuable as identifying abnormal findings.

With the appropriate safety nets in place, it can prevent angst, misdiagnosis, overtesting, overdiagnosis and overtreatment.

Human interoperability

Health professionals often complain about software and IT. It doesn’t always do what we want it to do. It slows us down, makes us do extra work.

A common problem is lack of interoperability. Computer systems are not talking to each other, a bit like Microsoft and Apple many years ago. Patients have also noticed that important information is not always available, which leads to inconvenience, delays and sometimes more tests.

At the same time GPs are unhappy that the hospital doesn’t provide essential info, for example when a patient has passed away, and hospital staff complain that referral letters don’t contain important triage information. Etc etc.

This raises the question, how ‘interoperable’ are health professionals? Do we know how we can best facilitate transfers and improve clinical handovers? What information do our colleagues need and when? How often do we meet to sort out issues in a collegial way?

It’s good to see there are passionate people working on these issues – but they need help. Computer systems are a reflection of the silos we work in. First fix human interoperability and our IT systems will follow.

How many days start with the letter T?

The other day I attended a leadership event at our local hospital. One of the speakers asked us “How many days of the week start with the letter T?”

The obvious answer is of course two, Tuesday and Thursday – but he said there’s another answer someone once gave him during a workshop, which is also correct: Tuesday, Thursday, today and tomorrow.

The point he made was that together people often solve problems in ways they wouldn’t have thought of on their own. Transformational ideas and break-through inventions are usually incremental processes that occur when different minds work together or build on each other’s work.

Steve Job’s iPod was based on existing mp3-players. Thomas Edison didn’t invent the lightbulb but improved it. The invention of the automobile and the airplane was the work of many; Henry Ford and the Wright Brothers just refined the ideas.

It never ceases to amaze me how people in a group – when the circumstances are right – develop creative ideas to solve challenging problems.

That evening, during dinner, I asked my children ‘Who knows how many days of the week start with T?” We had a bit of a discussion as a family until my 10-year old daughter said, “Seven days dad, because I always start my day with a tea.”

MBS Review: A stronger primary care system in sight?

Implementing healthcare reform in Australia is always an uphill battle. After a disappointing outcome of the much-anticipated Healthcare Homes program, some of the members of the Primary Health Care Advisory Group regrouped when they were appointed to the Medicare Benefits Schedule (MBS) Review Taskforce.

The recommendations by the taskforce to improve the MBS are refreshing in many ways. There is a move towards strengthening GP stewardship, voluntary patient enrolment, more non face-to-face care, a simpler careplan program and increased support for home visits – which seems sensible and is addressing the frustrations of many about the current Medicare system.

It appears there are a few things missing. For example, there is no recommendation to spend more time with our patients by committing to an increase in the schedule fee of longer consultations (item numbers 36 and 44). This would have been more useful for most patient encounters than a new one-hour plus item number.

I believe the residential aged-care item numbers will need more investment when the SIP incentive ceases to exist. There is mention of outcome-based payments which requires an explanation. The lack of detail about the dollar values makes it challenging to predict the impact on general practice and primary care.

In an ideal world the recommendations could result in an invigorated, modern, patient-centred health system. However, if history repeats itself, the result will be a simple cost-saving exercise, dressed up as clinician-led, evidence-based healthcare reform.

A typical case of make it or break it.

Why our opinions get us in trouble

“The history of human opinion is scarcely anything more than the history of human errors,” Voltaire said a long time ago.

Health professionals are trained to give opinions. It’s what we do every day in caring for our patients and leading our teams. Sometimes, however, it’s better not to give an opinion – or at least sit on it for a while.

Admittedly this is not always easy to combine with busy clinics, fast-paced lifestyles, opinion-based social media and rapid news cycles.

Nobel Prize winner Daniel Kahneman described two ways of thinking in his well-known book ‘Thinking, Fast and Slow’.

The first method, which he called system one, is fast, intuitive, runs automatically and cannot be switched off. It generates first impressions and intuitions based on experience. It is however subject to errors and biases and is poor at performing statistical estimates.

The second way of thinking, referred to as system two, takes more conscious effort and time. It is normally in low-effort mode but when system one runs into difficulty, system two will be engaged.

The two systems can work effectively together, as long as we are aware that our first guess, based on system one thinking, may not always be right and that we need to verify it by applying more analytical system two thinking.

The challenge, as I see it is, to have an opinion and an open mind at the same time.

This is an edited version of an article originally published on NewsGP.

Why are doctors so unkind to each other?

Although doctors look after their patients, they don’t always look after each other.

What has happened to collegiality? Why are doctors so unkind to each other? Anaesthetist Dr David Brewster and surgeon Dr Bruce Waxman ask these questions in the Medical Journal of Australia.

The authors are of the opinion that doctors have become too judgemental of their peers and that constant negative commentary has affected the workplace environment.

They write: “We have all been guilty of uttering critical colloquialisms in the workplace that resist positive interdisciplinary relationships. Unfortunately, our apprentice junior doctors adopt these expressions that promote lack of collegiality. Doctors learn to criticise and blame each other, rather than understand the differences we all face in providing the best care to our patients.”

Kindness can be as simple as saying thank you or acknowledging the work of a colleague, and a smile or a cup of coffee also go a long way, they argue.

Reading this in our medical journal gives me hope. It is not easy to discuss this topic publicly in a highly judgmental culture.

Decluttering our homes and lives

Accumulating possessions is not always associated with an improvement in wellbeing. It can actually lead to stress and health issues.

On the other hand, giving, donating and getting rid of stuff are usually described as positive experiences. Decluttering homes even has health benefits.

A new Netflix series, Tidying up with Marie Kondo, brings a powerful message across: organising our homes and offices comes with rewards.

Marie Kondo, dubbed the Japanese Mary Poppins, creates happiness by helping people throw away stuff they don’t need and organise their belongings. As a result relationships seem to improve and families live happier together.

The concept is of course not new, as professional organisers, unclutter clinics and clean-up blogs have been around for a while. But there is something appealing about watching this show.

Whether it is a desire for simplicity, a need to create organised spaces to think, work and live, or just guilt reduction, the slowly disappearing clutter towards the end is satisfying.

Marie Kondo makes decluttering homes, and lives, a fun activity. But she does something else. By asking whether objects spark joy she reminds us about our priorities and what life is all about – something we occasionally forget.

Who is serving whom?

What are we going to do with the data once we have collected it? Often, when I ask this question, the answer is vague.

In the race for big data the purpose has sometimes been forgotten. It’s like doing research without formulating a question first.

I wonder who is serving whom: Are IT systems supporting health providers or are we increasingly following rigid templates and blindly harvesting information for reasons we often don’t even understand?

It is time to pause and gain a better understanding of where we want to go. How can data and IT best support patient care and public health into the future?

What can stakeholders agree on with regards to secondary use of data? Where are the trap doors?

The outcome should always be a win-win, or mutual benefit.

Knowing what life has in store for us

Living with uncertainty is not an easy task. It can be the source of many anxieties.

I often go through this with my patients, for example when we may have found something sinister but more time is needed to confirm the diagnosis.

Yet, when it comes to our lives and deaths, we always live in uncertainty. But what about the opposite: what if we knew what life has in store for us?

Chloe Benjamin deals with this theme in her book The Immortalists.

At the beginning of the story four young siblings visit a fortune-teller who gives them the dates when they will die. This knowledge influences the rest of their lives and the choices they make. It becomes a self-fulfilling prophecy. Three of the four siblings die on the predicted date, largely as a result of their own doing.

I wonder if the information increasingly available through genetic testing will influence our lives and deaths in a similar way. Would we live our lives differently knowing what may be ahead of us? Could this knowledge also create its own anxieties and problems?

Here are five things to consider before ordering a genetic test.