Latest / EHA Unplugged / Setting the Standard for Quality Care in Hematologic Malignancies (with Prof John Gribben)

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Setting the Standard for Quality Care in Hematologic Malignancies (with Prof John Gribben) · EHA Unplugged

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  Everyone should have access to all of the resources that are
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  necessary to get them through that very difficult and painful
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  journey of being diagnosed with, told you have cancer, and then
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  coming up with a treatment plan and getting through whatever
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  that treatment plan might be. Welcome to EHA Unplugged, the
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  the EHA podcast. I'm your host for EHA, Robin
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  Dusvaik and Head of European Affairs at the European
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  Hematology Association's Executive Office.
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  And our guest today is Professor John Gribbon, very distinguished
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  guest Vice President of EHA as well as importantly, former
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  Chairman of its European Affairs Committee.
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  John, would you please introduce yourself a bit more?
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  So, Robin, as you say, I'm John Gribbon.
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  I was the President of EHAI, like to always call myself the
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  COVID president because of course I was President during
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  the whole COVID pandemic, of course, which meant that I
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  didn't have a Congress unlike this one.
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  I, as you said, had a role as a chair of the European Affairs
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  Committee. And I've had a long interest in
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  a question we're going to be talking about today, which is
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  about equity of care for patients and making sure that
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  all of our patients in hematology malignancies get
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  access to the care that they need.
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  My own special area of interest is in management of leukemia,
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  lymphoma, stem cell transplant, CAR T immunotherapy.
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  Thank you, thank you very much for, for being with us.
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  And it's a, it's a great pleasure.
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  And I think, you know, on the positive side, you can say that
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  you have managed to lead the EHA through the, the, the most rocky
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  times and, and, and we've kept our, our work continuing.
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  And you mentioned an important focus of that work, equity of
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  access for patients across Europe, affordable, equitable
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  access to innovative therapies. That is has been our long
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  standing advocacy priority. And it is the, the, the all
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  important context for what we will be discussing today, which
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  is the essential requirements for quality cancer care and the,
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  the EU cancer policies that are currently shaping up and for
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  which we are trying to to position hematology as an
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  integral part about those essential requirements.
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  The European Cancer Organization essential requirements for
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  quality cancer care in hematologic malignancies.
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  That's not exactly a very catchy title.
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  Is it? It's not very sexy, is it so?
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  But of course the European Cancer Organization is our
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  partner organization and one in which I know you've been doing a
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  great deal of work because they also share with us this view
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  about the need for equity they have for a whole variety of
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  different malignancies put out these what they call essential
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  requirements for care. So really that very long title
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  just means what do we need to ensure the best access and
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  diagnosis for our patients and that's of course what we worked
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  with. So the European Cancer Organiser
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  ECO is how we call it for short put brought together us from EHA
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  together with a whole variety of other organizations, a real
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  multi disciplinary approach. And very importantly, I'm sure
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  you're going to agree with me on this is bringing in the
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  patient's voice. So the patient advocates were
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  very much a part of this. We're very committed to
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  believing that patients should have the major say both in terms
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  of how these things are set up and how they're used.
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  And it was about sitting down and determining among us all
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  what were the factors that we thought were important, what
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  were needed for care in terms of patients being found, diagnosed,
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  having a treatment plan and then be offered treatment.
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  So you mentioned the multidisciplinary approach.
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  You LED a broad task force including representatives from
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  many organizations who are members of or involved in the
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  European Cancer Organization. Can you tell us a bit more about
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  who are part? You already mentioned the
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  patients, but how was that task force, that broad group
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  composed? Well, you're absolutely right.
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  So a requirement of what we were looking at were, were
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  organizations that were part of Eco's broader body.
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  We considered the people who are perhaps most important in
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  diagnosing hematology malignancies, the
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  hematopathologist. So what's a hematopathologist?
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  Well, hematopathologist historically was the person that
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  looked down the microscope at the biopsy and said this is a
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  lymphoma, this is a leukemia, this is the myeloma.
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  Increasingly now, of course, they're also the person who
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  brings together what we call an integrated report.
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  That is not just looking at it, but doing the molecular testing,
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  the immunophenotyping, what are the proteins that are expressed
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  on the surface. So those people are the people
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  who make the diagnosis on the basis of the bone marrow or the
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  lymph node biopsy or whatever other biopsy we are providing to
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  the pathologist. We had the voice from other, you
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  know, in other, some countries medical oncologists rather than
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  hematologists are involved in the care.
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  So making sure we were involving all the voices of people who may
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  be looking after any patient with hematologic malignancies,
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  radiation oncologists, people representing specialist
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  diseases, and of course members of representatives of of patient
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  advocacy groups who again, were part of Eco's membership to be
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  bringing in that patient's voice.
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  A real multidisciplinary approach.
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  Radiologists, dietitians, physiotherapists, all the people
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  who'd be involved not just in helping the diagnosis but in
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  helping the patients in their journey towards getting treated
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  and getting better after their treatment.
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  So John, can I ask, was it easy or was it difficult to find
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  alignment amongst all these partners?
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  It was actually very easy to find alignment in what we were
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  doing. It was very difficult in getting
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  everyone together and keeping everyone engaged.
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  So the process took longer than we hoped.
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  I LED this task force because of course, it started while I was
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  still president and while I was still chair of the European
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  Affairs Committee. By the time, you know, we got it
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  published, that process took longer, but the process was not
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  never delayed by there being a disagreement among us what where
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  those requirements and how things should be. 1 important
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  component in thinking about this in in lots of the other
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  malignancies, there's this whole question of whether you
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  centralized care or whether we should have care much closer to
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  the patient's home. Everyone's appreciates that we
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  want the care to be as near to the patient's home as possible.
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  Hematologic malignancies are difficult.
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  They're very complex. The The Who classification for
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  hematology malignancy now has, has literally, you know, 300
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  subtypes of diseases. Getting that diagnosis correct
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  starts the whole journey on how the patient's treatment is
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  offered. And, and getting it wrong means
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  that patients are going immediately down the wrong
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  direction, getting offered the wrong treatment, and that that
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  just leads to all sorts of problems.
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  We're also hugely aware that in hematology malignancies, one of
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  the major problems is there's a big delay between often when a
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  patient first presents and when a diagnosis is made.
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  Patients with multiple myeloma often having three and four
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  visits to doctors before being diagnosed.
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  T cell lymphoma, Hodgkin's disease patients often
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  complaining of the same thing. So other words, they're
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  presenting to the doctors with clear symptoms, it's not being
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  recognized, not picked up, the right tests aren't sent and then
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  people are sent away in a diagnosis missed.
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  We also know, of course, the early diagnosis and prompt
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  treatment can be very important. So that delay in diagnosis can
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  be an issue. For this reason, our consensus
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  was we should look to centralized that initial
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  diagnostic care. I already mentioned to you
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  earlier that the pathologists now are not just looking down
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  the microscope. We're bringing together all
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  these tests, these molecular testing often that the whole
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  sequencing of the DNA of the tumor.
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  Those tests are only available in in large centers, and they're
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  only available in centers who have the expertise to be able to
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  do that type of analysis. So For these reasons, we all
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  agreed to that. For hematologic malignancies,
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  that original diagnosis and treatment plan should be done in
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  a central hub. The plan then would be if that
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  treatment is complex and requires treatment in that
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  central hub, then that's where the ideal treatment should be.
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  But if the treatment plan is then established and that
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  treatment plan can be executed near the patient's home, that's
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  ideal. So everyone agreed on that.
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  The next issue we had to agree on is whether we were going to
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  want to write guidance that would be available everywhere
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  now or whether we should be aspirational to say, well, what
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  you have right now is not adequate.
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  What we want to write are what we call achievable but
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  aspirational goals. That is, we want to set the bar
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  high largely so that those colleagues of ours, often from
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  countries less resource than we have in, in, in, in Western
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  Europe, would be able to go to their organizations, their
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  government, their sponsors, and say these are the requirements.
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  This is what we need to be able to achieve there.
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  And for us, that was hugely important to be able to support
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  people in their aspirational goals to set up what is required
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  in 2025 to be able to make a diagnosis of hematologic
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  malignancy. So these essential requirements
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  for quality cancer care and hematologic malignancies are
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  aspirational but achievable. Can you say a few words about
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  how, how difficult, how challenging the the very
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  divergent situation is across Europe?
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  You, you're absolutely right. When we talked to and we had
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  course representations within our task force of individuals
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  working in less resourced countries who tell us, of course
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  they know exactly what is required but don't have access
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  to those issues. Well, of course part of the
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  European Cancer Plan should be that those people who are
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  working in countries should have access to be able to, if they
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  don't have it themselves, to be able to send the material into
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  another centre where that diagnosis can be made.
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  Often it's not necessary for the patient to go to the hub, but
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  all the material should go in there to be able to make a
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  diagnosis. The true aspiration of course,
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  is that those resources will be made available in each of the
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  member states. But of course the idea would be,
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  well, at least we should provide centres that could provide that
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  level of care until those other centres get there.
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  The it's a case of resources and then it's a case of being able
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  to understand, interpret, then use those resources to make that
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  accurate diagnosis. Yes.
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  John, you have explained very clearly why these essential
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  requirements are, are so important and it's impossible
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  for us in this short period of time to cover all the, the, the,
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  the recommendations really that the the document contains.
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  Am I right if I describe the essential requirements paper as
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  a combination of organizational guidelines and recommendations?
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  I think that's absolutely true. Organization in terms of what we
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  considered is required to be part of that, what we call MDT
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  or multidisciplinary team, who are those people who should be
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  at that meeting where a case is discussed, reviewed, everything
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  brought together in a treatment plan comes up in many countries.
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  Those, those, those requirements are already there.
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  So we were not reinventing the whole, you know, the whole wheel
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  here. These are the ways in which it's
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  done in, in, you know, for instance, in England, where I am
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  the, you know, that multidisciplinary team already
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  exists in exactly this way and that So what we call hub and
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  spoke model is already there in other countries.
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  This was a quite alien concept. And the idea that you even bring
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  together a multidisciplinary team to discuss a patient's
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  diagnosis was, you know, why do we do that?
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  Why, you know, why do we even why is that even necessary?
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  And often what it is is people would bring in the expertise
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  that they felt was required as the patient's journey
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  progressed. We feel very strongly that
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  everyone is there at the beginning.
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  Everyone understands the needs. We can come up with a a coherent
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  plan that will offer quote, of course, we've said it already
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  over and again is important. That is equity.
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  Everyone should have access to all of the resources that are
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  necessary to get them through that very difficult and painful
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  journey of being diagnosed with a told you have cancer and then
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  coming up with a treatment plan and getting through whatever
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  that treatment plan might be. That the fact that the essential
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  requirements are so attuned to the, the, the needs of of
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  patients as are so patient centered, I think that is one of
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  its real strength. I think it will play a great, a
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  very helpful role in EH as engagement with policy makers
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  and and regulators. We're working hard as the HA to
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  make sure that hematology, hematologic malignancies are not
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  overlooked in implementation of EU cancer policies.
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  There's the Europe Beating Cancer Plan, for example, which
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  as has as one of its priorities the development of an
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  infrastructure of comprehensive cancer centers.
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  And you will agree with me that it's very important that
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  hematology is an integral part of such comprehensive cancer
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  centers and that these essential requirements should be taken
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  into account in organizing care for hematologic malignancies in
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  that context. I think it'll come as no
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  surprise to you, Robin, for me to say that I completely agree
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  with what you're seeing. There are two things I'm glad
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  you picked up in terms of the guidelines. 1 is that it is very
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  patient focused, the importance of the patient's voice in terms
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  of the diagnosis, in terms of assessing the outcome, in terms
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  of, you know, it's not just important to us that a
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  patient's, you know, now in remission, patients should be in
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  remission and well, and having the resources to rehabilitate
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  themselves back into completely normal life.
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  So I think you know, very well, you and I worked together very
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  hard within EHA to make sure that we had an increased patient
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  voice. And of course, now we've got
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  patient committee and that voice was very important.
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  But you're also right in terms of the second thing that is in,
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  in often hematologic malignancies are not thought
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  about in terms of cancer. The, the idea that a
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  hematologist rather than an oncologist is the person looking
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  after the patient means that in some countries their, their,
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  their voice is not heard within the whole kind of structure of
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  thinking about cancer. So hematology's often got quite
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  a quiet voice. Thanks to you, we've got a
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  loader voice within Europe. But it's important that that
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  whole concept was not overlooked.
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  And ECO or European Cancer Organization to their credit, of
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  course, recognise this is important and you know, worked
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  with us very closely, but of course we, we hadn't been a
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  member of that organization for all that long.
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  So we ourselves, you know, recognize the need to look for a
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  stronger voice for cancer overall, but then consider it to
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  be eh as role to be the one screaming at the top of our
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  lungs about remem remember the hematologic cancers and don't
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  just focus on those solid tumors, which are of course more
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  common. But the the impact that a
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  diagnosis of leukemia can have an or myeloma can have on a
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  patient is absolutely enormous. And that shouldn't be ignored.
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  We need to wrap up soon, so finally, could you explain who
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  should be reading these essential requirements?
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  Well, I think, I hope that that people looking after hematology
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  malignancies will look at these, these things.
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  I'm hoping very much and I know already this is happening, the
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  patient support organizations are looking at this, but we also
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  want the policy makers to be looking at this.
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  This is, these requirements are written very much with policy
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  makers in mind. When we're setting essential
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  requirements. This is the bar for the minimum
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  at which we want to be provided. And if we're talking about those
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  under resourced countries, if they don't have that bar,
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  they're not going to be able to just make you.
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  You can't just make these centres up your yourself without
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  the resources required to do this.
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  So I'm hoping very much that the policy makers will read it.
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  And if they're not reading it, I'm hoping you and your office
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  will be making the the policy available to the right people to
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  be able to be aware that they're there.
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  Presumably they're not going to read the whole guidance, but
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  we'd like to make sure that they recognize where are the issues
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  that we see are important. The important factor for us here
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  is we know that there are huge disparity in terms of patient
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  care, not just across Europe, but even within individual
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  countries between people living in or near large cities and
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  people living out, you know, in the countryside.
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  We need to think about how we're providing that care equitably
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  across the whole country and importantly across the whole of
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  Europe, because that's ultimately what the European
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  Eating Cancer plan is all about. You have wonderfully explained
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  why this is so essential and we encourage everyone to read it.
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  Thank you so much for having let this work, this very important
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  work on behalf of EHA. We will work hard to make sure
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  that it has the gets the attention, has the impact that
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  it deserves. Thank you very much, Professor
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  Gleben John for for this and for taking the time for recording
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  this podcast. And thank you very much to all
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  the the listeners for your attention.
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  Thank you very much. And I'd just like to thank
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  everyone involved in the task force and getting this paper
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  out.