Can Doctors and Nurses help Dialysis patients recover?

In the case of dialysis dependent acute kidney injury patients this is a question which Dr Dinna Cruz  and colleagues (University of California San Diego) are asking and seeking opinions from both nephrologists and non-nephrologist doctors and nurses involved in care of dialysis patients.  It was a question which arose out of discussions at this year’s Continuous Renal Replacement Therapies conference (CRRT 2014). Personally, I think it is a brilliant starting point for research to go out and seek the opinion of those “at the coal face” actually treating patients. If that includes you, please take a moment to complete the survey. If it includes someone you know, please pass this request to participate on.  Here is Dr Cruz’s request:

Currently there is much interest regarding the recovery aspect of AKI. A specific area of interest is how to enhance recovery in patients who remain dialysis-dependent at the time of discharge. It is hypothesized that patients with potential for renal recovery may require a different care plan than the “usual” ESRD patient.

Therefore we are asking your opinion regarding the post-discharge care of such patients, using this short survey. It will take only a few minutes of your time, and represents a starting point for developing potential strategies for these patients. We think it is very important to have the input of specialists from different healthcare settings and countries to give a more balanced view.

Kindly complete the survey appropriate for your specialty, then please share both these links with other colleagues so we get more responses from around the world

For nephrologists:

https://www.surveymonkey.com/s/postdischAKIcare_neph

For non-nephrologists, including acute and chronic dialysis nurses:

https://www.surveymonkey.com/s/postdischAKIcare

Thank you very much for your help!

Source: Anna Frodesiak-Wikimedia Commons

Source: Anna Frodesiak-Wikimedia Commons

Policy our lives depend on: Health research in election 2014

We all care about health – ours, our family’s, and even that of one or two politicians (perhaps). We also care that the 15 billion dollar annual health budget is spent on health care that works.  I contend that both these cares are only as good as the health research that underpins the treatments we receive.  Therefore, I have compiled what I could discover about health research policy from the policy documents available online of the political parties contending the current NZ general election. I have tried to focus on where health research in a particular area is promised or on health research infrastructure. In some places I’ve extracted from a more general science and/or innovation policy those policies I think likely to impact health research.  Obviously some parties are still releasing policy.  I invite them to send me any policies that they think relevant and I will update.  I think you will be surprised at what is missing in the list below.

The parties are in reverse alphabetical order.

United Future*

Health Policy: http://www.unitedfuture.org.nz/policy/health

  • Increase funding for health research to bring New Zealand’s funding up to at least the OECD average as a proportion of GDP;
  • Establish a national register for Type 1 Diabetes, a diabetes research fund, and increase funding for Type 2 Diabetes testing;
  • Make no change to the legal status of cannabis for medicinal use until a robust regulatory testing regime is developed that proves cannabis use causes minimal harm to an individual’s health
  • Introduce a sabbatical scheme that would allow health professionals to take a year out of work every five years to update their skills and knowledge;
  • Promote more research to address youth related health problems such as suicide, alcoholism, and bulimia.

Science Policy: http://www.unitedfuture.org.nz/policy/research-science-and-technology

Too long to put in detail, but policies such as “simplifying different funding mechanisms” and specifying biotech as one of half a dozen key research areas requiring focus are likely to impact on health research.

Health spokesperson (Associate Minister of Health): Peter Dunne MP peter.dunne@parliament.govt.nz

 

New Zealand First

Health Policy: http://nzfirst.org.nz/policy/health

  • Ensure an on-going commitment to the funding of health research, research institutes, and for training.

Science Policy: None

RS&T Portfolio holder: Tracey Martin MP tracey.martin@parliament.govt.nz

Health Portfolio holder: Barbara Steward MP   barbara.stewart@parliament.govt.nz

 

National

Health Policy: https://www.national.org.nz/news/features/health

No specific policy on any health research

Science Policy: None

Health spokesperson (Minister of Health): Tony Ryall tony.ryall@national.org.nz

Science spokesperson (Minister of Science and Innovation): Steven Joyce steven.joyce@national.org.nz

 

Maori Party

Policy: http://maoriparty.org/our-policies-kawanatanga/

  • We will support: … Roadshows to promote educational pathways in areas where Māori are under-represented – ie health science academies (Te Kura Pūtaiao Hauora) or science camps.

Science Policy: No specific policy but some comments in the policy above about research and development include establishing an investment fund for Māori Research and Development which may impact on health research.

Health or Science spokespeople: Unknown

Contact: Teururoa Flavell MP teururoa.flavell@parliament.govt.nz

 

Mana

Health Policy: http://mana.net.nz/policy/policy-health/

No policy specifically dealing with health research

Science Policy: None

Contact: Hone Harawira MP hone.harawira@parliament.govt.nz

 

Labour

Health Policy: http://campaign.labour.org.nz/full_health_policy

  • We need a health system that is based on evidence about what works – not fixated on manufactured targets or political slogans

Health spokesperson: Annette King annette.king@parliament.govt.nz

Science Policyhttps://www.labour.org.nz/sites/default/files/issues/science_and_innovation_policy.pdf (UPDATE – released 25 August)

  • Reinstate post-doctoral fellowships for recent PhD graduates (scaling up to %6m per year)
  • Prioritise an increase in our public science spend to link New Zealand to the OECD average over time
  • review and reform the National Science Challenges, on the basis of advice from the science community and building on the success of respected funding bodies such as the Marsden Fund

    provide integrated support for innovation across the Crown Research Institutes and tertiary institutions, and through private-sector research activities, and sectoral and regional initiatives

    review the criteria of the Performance Based Research Fund to ensure that a broad range of research success is recognised

    support research in universities, including through a continued commitment to Centres of Research Excellence

    encourage closer association between business and university commercialisation centres to ensure ‘discoveries’ within the universities are most effectively brought to market and have the best chance for success

    support and foster a collaborative university system, where each of our universities is enabled to focus on its areas of research and teaching strength.

  • support research in universities, including through:
    • a continued commitment to Centres of Research Excellence,
    • ensuring the sustainability of the Marsden Fund and other research funds
    • supporting the career pathways of graduates, to encourage our researchers to develop their careers and contribute to New Zealand.

Science Spokesperson: Moana Mackey MP moana.mackey@parliament.govt.nz

 

Internet

Health Policy: https://docs.google.com/document/d/1g4RY7Sh-vYZN1WAIx_A-AEZlYzNjMhzY81KnfKLMGp0/edit

Copyright and Open Research Policy: https://docs.google.com/document/d/1Le3rY0wlh9tJaBzpxK5xrpeWID-j5FmeE4dqONdQATE/edit

  • Mandate that all taxpayer-funded research be open access with the public able to freely access and re-use it.

Health or Science spokespeople: Unknown

Contact: hello@internet.org.nz

 

Green

Health Policy: No general health policy, but some on particular issues.

Update 25 Aug:  I have been informed that the Greens have a health policy on a different web site https://home.greens.org.nz/policy/health-policy.  Their election site http://www.greens.org has no health policy.

No policy specifically dealing with health research.

Green innovation Policy: https://www.greens.org.nz/policy/smarter-economy/smart-green-innovation

Some aspects of this policy may impact health research, in particular:

  • $1 billion of new government funding over three years for research and development to kick-start a transformational shift in how our economy creates wealth;
  • The Green Party will fund an additional 1,000 places at tertiary institutions for students of engineering, mathematics, computer science, and the physical sciences.

Health or Science spokespeople: Unknown

Contact greenparty@greens.org.nz

 

Conservatives

Health Policy: None

Science Policy: None

Health or Science spokespeople: Unknown

Contact: Office@conservativeparty.org.nz

 

ACT

Health Policy: http://www.act.org.nz/policies/health-0

No policy specifically dealing with health research

Science Policy: No science policy

Health or Science spokespeople: Unknown

Contact: info@act.org.nz

________________________________________________________________________________________________

*Disclaimer: I used to be a member of United Future and made submissions on the health and science policies in 2008. A few echoes of those submissions remain in the policies.

Does being unconscious mean you should miss out?

The front page of the Herald this morning questions the participation of unconscious patients in clinical trials.

While I understand Auckland Women’s Health Council co-ordinator Lynda Williams unease, I also detected a failure to understand the process of how progress in medicine is made.

First, all research in such cases is approved by ethics committees which include lay people and patient advocates. That is clear in the article. In my experience they are very very thorough at ensuring the best interests of patients are highest priority. Family or whanau consent is almost always required (especially if the research involves an intervention*). These are the same family or whanau who are talking with medical staff and, at times, providing consent for medical interventions.  When a person is vulnerable it is up to all around them to treat them with respect and care.  Offering them, through their family, the opportunity to participate in research is showing respect for them as a valued member of society who is prepared to give in the interests of others.  Indeed, it is a right of the patient, through their family, to be offered such research.

Second, without such research there can be no progress in medical treatment of unconscious critically ill patients. In order to save lives interventions must be made at critical junctures during the progress of a disease, normally at the earliest possible time. It is in the best interests of us all that such research take place. The alternative is to give up hope and allow current mortality rates to remain as they are. I research a disease (Acute Kidney Injury) which affects 1 in 3 people in the Intensive Care Unit and increases their chances of dying about 4 times. There is no treatment and it is devilishly difficult to detect in the early stages. An estimated 2 million a year die because of Acute Kidney Disease. Without the generosity of family and friends allowing trialling of an intervention (always based on years of prior research and judged to be possibly efficacious) there will be no progress and the death toll will remain high. I salute family and patients around the world who have participated in such studies in the past, and will do so in the future.

Disclaimers: 1. I have no knowledge or understanding of the antiobiotic trial under discussion.  2. I have been involved in an intervention study where participants were unconscious at the time consent was obtained.

*Note, there are some circumstances where when minutes count an intervention is required.  Research in these areas is ethically more difficult, but no less necessary.  I welcome public debate in this area.  While ethics committees can deal with ensuring minimisation of harm in such circumstances, we do need to decide as a society what sacrifices of individual rights we should make for the greater good.

A letter for all District Health Board Candidates

Dear District Health Board Candidates

Soon I and thousands like me will cast our votes to choose our District Health Boards.  Given the huge budgets of DHBs and the huge potential to influence health outcomes I want more information from you than a couple of paragraphs I received with the voting packs.  Below are two questions I think are important.  As this is an open letter on a blog site, I invite others to submit their questions too.  I also invite you, the candidates, to state your name, the DHB you are running for and your response to my or other posted questions (ie not just the blurb from your pamphlets).

My questions:

1. What single health intervention do you want to see implemented and what evidence do you have that it would be efficacious?

2. What plans have you for increasing patient participation in research?

Regards

Dr John Pickering

Don’t call this scientist soft!

I’m a soft money scientist, not because I’m cuddly (I am), or because I’m an easy mark for a fiver (I’m not), but because my job and my scientific output depend on my ability/luck at raising money.  As my 100th blog post I thought it time to describe this precarious state of affairs, especially as your taxes may be contributing to it.  Also, when the penny dropped with some friends of mine, so did their jaws.

Before I get into the description, let me say this: It is the best of jobs, it is the worst of jobs.  It is a privilege to spend most of my time solving the puzzle that are the diseases I study with the hope of making a difference to patients in the future.  It is appallingly frustrating that I cannot conduct long-term research or even rely on having an income next year because of the continued axe floating a few feet above my cranium.

In New Zealand, at least, scientists come in many flavours.  There is the industrial scientist earning a salary in a company somewhere who will sink or swim along with the fortunes of the company, there are the scientists in Callaghan Innovation, Ag Research, and other government entities that interface between academia, the commercial world, and the provision of scientific services.  I understand they have a variety of funding sources – in recent years the government side of it has moved from project grant based towards more bulk funding.  Given what is happening with Ag Research, I don’t know if that means more secured tenure for these scientists or not … I’ll let them describe their predicament.  Then, in academic institutions, there are the lecturer scientists who both teach and research.  Traditionally the spend their time 40% teaching, 40% researching, 20% in administration, but there are many variations on the theme. Normally, these people have a more-or-less permanent position (at least as long as students keep coming to do the courses they teach).  To get funding for their research (though not their salary unless they want to “buy out” some teaching time) they need to apply for grants.  In my institution, University of Otago Christchurch, most of the teachers are also active senior medical staff with joint appointments with the CDHB.

Then there are the soft-money scientists.  Most PhD students go on to do a 1 or 2 year post-doc (or two) which is funded by a grant that has been obtained by a senior researcher somewhere.  This is “soft-money” – meaning of limited duration and usually directed at a particularly project.  Most post-docs move into lecturing or leave academia.  A few may pick up additional fellowships or join a group which has the funds to employ them.  To continue in their chosen career they must contribute to the gathering of resources (money money money).  They have no training in this, but after the first few grant rejections begin to learn.  They realise they are competing against scientists who are lecturers or in other entities who already have their salaries covered.  However, the first thing they must put on their grant is their own salary + overheads (113% in my institution).  This, of course, limits what they may be able to say they will do in a grant application as they are not able to write into the grant all the expenses they’d like.  This puts them at a competitive disadvantage.  Another source of income for some groups may be commercial.  This may be the testing in their labs of some equipment  or a new product, or some forensic work etc. Not everyone has that option.

My own sojourn has been a little off the beaten path as six years ago at the age of 40 mumble I returned to the scientific fold after 15 years out of it.  My return was funded for two years initially by a Health Research Council Grant (HRC; your tax dollars) and by a private company who had obtained some government funding for development (Syft).  Since then I’ve had grants from the Australia New Zealand Society of Nephrologists (twice :)  ), Lottery Health, University of Otago Research Grant, and the Marsden Foundation.  My current funding till the end of the year is 41% from a Marsden Foundation grant and 59% from the profits of the last project (a commercial one) our lab-based group ran (alas … another long story, there is now no lab-based group).  Having multiple sources of income is not at all unusual for the more senior research scientists.  Indeed, the current funding levels of even the largest of the grants (HRC and Marsden) are not sufficient to fund a full time senior scientist along with all the associated costs of running a larger project (which these are intended for). The application success rates (7%) make it unlikely that anyone, other than in large established groups with broad funding basis whose success breeds grant success (rightly so!), will be able to sustain a long-term career based on grant funding alone.

One source of funding that I’ve not talked about is philanthropy.  This plays a vital, though small, role in New Zealand science.  Most are familiar with the likes of the Heart Foundation or the Cancer Society which take donations and use some of them for research projects.  An intriguing, though seldom visited, new source of funding is so called “crowd sourcing” where someone pitches a project online to raise money – Dr Siouxsie Wiles successfully raised US$4,480 last year doing just that. This, of course, will not sustain a scientist like myself.  What will?  What do you think is reasonable to spend on science and scientists?  How about the same as we spend per classroom?  According to a Principal acquaintance it costs about $17K per pupil p.a. to run a school.  The average class size is about 23 pupils making it a tad under $400K p.a per classroom.  I think what I do has similar value to educating a class full of kids, but right now I’d settle for half the amount.  Governments, of course, must make choices and impose certain limits on spending.  The current NZ government’s moves to increase spend in research are welcome, but this will at best make a small dent in the grant funding success rate.  Individuals with discretionary disposable income, though, may have other priorities.  I believe that for New Zealand to do more than tread water in the scientific world that it will require those individuals who recognise the value of science to be willing to donate substantial amounts towards science, particularly towards supporting scientists (scientists first, projects second). Indeed, for my own growth and survival as a scientist – for me to be able to put the vision I articulated last week into practice, I see that it will only be possible through the generosity of others.

My 10 Commandments of a Data Culture

Thou shalt have no data but ethical data.

Thou shalt protect the identity of thy subjects with all thy heart, soul, mind and body.

Thou shalt back-up.

Thou shalt honour thy data and tell its story, not thy own.

Thou shalt always visualise thy data before testing.

Thou shalt share thy results even if negative.

Thou shalt not torture thy data (but thou may interrogate it).

Thou shalt not bow down to P<0.05 nor claim significance unless it is clinically so.

Thou shalt not present skewed data as mean±SD.

Thou shalt not covet thy neighbour’s P value.

The tao of science missed by National Science Challenges

The challenges are out. The committee has spoken. And now the critics respond.  Word on science street and in the media goes a bit like this:

Brilliant $73M more for science in New Zealand.  Well done Steven Joyce and the National Party.

Lacking in lustre.  These challenges are all a bit predictable. [eg Prof Hendy here]

Damn.  My research does not fit any of the challenges. [eg Dr Wiles here]

I sympathise with each of these opinions.  The National party has set a goal of 0.8 percent of GDP for science.  This is to be applauded. They have chosen a path of narrowing the scope of science to ensure it meets their own ideology of “government’s job is to grow the economy”.  This is reflected in the challenges and the language around them.  For example the challenge “High value nutrition: research to develop high value foods with health benefits” in the Peak Report document states:

There is enormous capacity to leverage both our primary industry and medical research to discover, validate and develop nutritional products with proven health benefits of significant market potential.

Some scientists seem to think that economic goals some how “devalue” science.  I am rather more pragmatic in suggesting that an economic return is an inevitable result of doing science.  The difficulty, though, is that any attempt to pick winners – and that is what the National Science Challenges does, fails to recognise that science at its best is not shackled but free to explore and expand.  Science by its very nature is at a frontier and a journey into lands unknown.  A pathway cannot be chosen for it and any attempt to do so will as often as not go straight past the pot of gold.

The National Science Challenges have been chosen by committee – there are “winners” and “losers” and the result is necessarily bland.  This is inevitable when science is done by committee.  Great science comes from great scientists who are driven to great discoveries.  It is driven by leadership, and leadership never comes from a committee.  On Morning Report this morning the interviewer and Prof Hendy both mentioned the US Space Program as an example of a truly exciting and great science challenge.  That challenge came from a great leader, President Kennedy, and while driven politically, the political goal was the same as the science vision.  Sadly, once the political goal had been reached the politicians turned elsewhere and the science community was left holding on to a few rocks and a vision shattered.

From my perspective what is needed for science in this country even more than challenges is vision and visionaries.  We need to fund scientists first and projects second.  Sadly, we have that priority completely around the wrong way.  Dr Wiles who ironically was one of the faces of science on the television campaign encouraging public submissions on the challenges is disappointed that her area of research, infectious diseases, is not acknowledged in a challenge.  I am disappointed that enthusiastic talented scientists like Dr Wiles are not directly receiving 3, 5, 10 year’s of salary and research cost support from this new money to pursue their vision. It’s not so much the topic of research as the researcher that counts.  I have a challenge for the New Zealand government.  And that is for their science policy to be evidence based (see Grant Jacobs’ blog post).  Part of that puzzle is whether it is best to fund researchers or to fund projects. This is why I say the Challenges have missed the tao of science – they are not in harmony with the way science is really done.  Let us run a trial.  Randomly select ten scientists and fund their salaries and $100K a year and let them pursue whatever they want.  Compare this to the results of randomly selected National Science Challenge funded projects with the same number of scientists involved.  The title of the trial could be “Is picking winners better than letting winners pick?