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.

Spin and misrepresentation: the toxic mix of academia and media

A good example of the toxic interaction between academia and the media is the coverage of a recent study that claimed parents did not trust their GP. The research data clearly showed Australian parents have confidence in the family doctor – but that didn’t seem to matter.

The study and the uncritical, sensationalised media reports about its bizarre conclusions received a dishonourable mention in ABC’s Media Watch. In this blog post Professor Moyez Jiwa and I examine a worrisome trend in the reporting of academic research.

With an ageing and increasingly morbid demography, health care costs are rising exponentially and, therefore, health policy is under constant scrutiny. Each previous reform is considered and, in many cases, reversed by every new government. In this context, reports that suggest any cause for public concern about the performance of health practitioners or hospitals are seized upon by the media to promote stories that will draw an audience.

In the new era of plain speaking, it is now possible to level outrageous claims against the beleaguered health industry. It is open season on doctors and their employers who may be perceived as a weakened, divided and defensive target. With each claim and counter claim the media chant “fight” and the protagonists oblige.

At the same time, the tertiary education sector is under similar pressure, having long participated in the competition for “most cited research”. The key performance indicators for academics are to grow academic outputs in peer reviewed journals. More than ever, it is a case of publish or perish, and sometimes this comes at the expense of quality.

Sensational stories

The temptation to frame the performance of health practitioners in less than flattering terms may be hard for the media to resist, and poorly designed academic research provides opportunities for them to harvest dubious results. Data to draft sensational stories are ever more readily available, as algorithms capture everything that can be measured and very little of what really matters.

As Lohr and Singer (The New York Times) state:

“… data science is a technology advance with trade-offs. It can see things as never before, but also can be a blunt instrument, missing context and nuance.

Editors of the burgeoning academic journals now vying for higher citations are also tempted to publish articles that can create a media storm and draw attention to their offering among the plethora of me-too rags, many of which derive income from advertisements targeting health practitioners.

Misrepresentation & spin

Exaggerations, simplifications and misrepresentations of research findings are often fuelled by the wording of abstracts and the use of spin in press releases from universities. This self-sustaining race to the bottom can damage health systems as well as grassroots health practitioners working in it and, worse, it may affect health outcomes.

It is time to pause for reflection. There are several elements in the eye of this perfect storm:

  • a sensitised and dissatisfied public;
  • electronic data that are ever more readily available;
  • a government with an eye on its dwindling coffers;
  • a squeezed and competitive tertiary education sector competing for ‘best’ university status based on research outputs rather than teaching excellence;
  • an academic culture encouraging quantity instead of quality of research;
  • media hungry for market share and advertising income;
  • a tolerance for sensational statements because of the trend to behave as if we all live on the set of a soap opera.

Doctors sometimes get things wrong. However, it is also very hard to draw conclusions from “data” without a great deal of the context in which the information was gathered. Data can be manipulated; it can be misleading, if not aberrant. Scientific methods can be flawed and the peer review process can be, and often is, faulty.

Journals publish what sells and the media report bad news because that’s what the public seems to buy. Finally, sound bites and 140-character sentences are now accepted as the way to communicate about complex issues. That includes issues that defy simple explanation.

Stop the rot

What is at stake, however, is our health. Every outrageous comment from an academic with a barrow to push and job to protect heaps more pressure on the very professionals who must prevent, diagnose and manage our illnesses. The results of poor research — badly designed, widely publicised, seemingly endorsed by peer review and poorly understood by a manipulated public — reduce trust.

Many academic institutions, researchers, journals and journalists work to high and ethical standards. However, our hope against the tsunami of chronic and complex conditions is the men and women who commit to the care of people, and we need to stop the rot before it sets in. The responsibility for reversing this state of affairs rests on many, but especially on the shoulders of the tertiary care sector, which needs to call out bad behaviour.

Professor Moyez Jiwa is Associate Dean of the Melbourne Clinical School at the University of Notre Dame. Dr Edwin Kruys is vice-president of the Royal Australian College of General Practitioners. This article originally appeared in MJA Insight.

Rest In Peace, BEACH

To raise new questions, new possibilities, to regard old problems from a new angle, requires creative imagination and marks real advance in science ~ Albert Einstein.

Here’s a little quiz. True or false? (Answers below)

  1. Herpes Zoster (shingles) in Australia continues to increase over time.
  2. Gastro-oesophageal reflux disease imposes a high level of societal and financial burden on the community in Australia.
  3. Of all GP consultations conducted in a language other than English, more than eighty percent are conducted by multilingual GPs who speak the patient’s language.
  4. For 15% of people living with schizophrenia in Australia, ongoing management is provided by their GP alone.

Before you scroll down to the answers, you need to know that the common source of this information is the research program BEACH, short for Bettering the Evaluation of Care in Health.

For the past eighteen years BEACH has provided us with important information to improve patient care and primary care services in Australia.

Government funding for the research program will cease which means BEACH will be closed. The government will also stop funding the Primary Health Care Research & Information Services (PCHRIS).

This has caused another shock wave through Australian general practice and primary care.

A sad day for patients, GPs and health providers.

Answers: 1 true, 2 true, 3 true, 4 false (this should be 30-40%)