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Empowering Healthcare through Patient Advocacy (with Jan Geissler) · EHA Unplugged

• 0:03
  Greetings and welcome to EHA Unplug, the official podcast
• 0:06
  channel of the European Hematology Association, EHA.
• 0:10
  Hello, I am Isabella Rivera, a medical writer for EHA.
• 0:15
  Today we have the pleasure of interviewing Jan Heisler, a
• 0:20
  patient advocate and social entrepreneur who has made
• 0:23
  significant contributions to the field of hematology and patient
• 0:27
  advocacy. John Heisler was diagnosed with
• 0:31
  chronic myelocytic leukemia CML in 2001 at the age of 28, which
• 0:38
  became the catalyst for his journey into patient advocacy.
• 0:44
  Since then, he has Co founded several patient advocacy
• 0:47
  organizations, including Leukanet, the European Cancer
• 0:51
  Patient Coalition, the CML Advocates Network, and
• 0:56
  Advocates, a think tank and consultancy on patient advocacy
• 1:00
  and patient engagement. Jan Heisler is also actively
• 1:06
  involved in EHA as a member of Patient Advocacy Committee pack.
• 1:12
  So in this episode, we'll explore how EHA can support
• 1:17
  patient advocates and how patient advocates in turn can
• 1:21
  contribute to the work of hematologists.
• 1:24
  Thank you for being with us today, Jan.
• 1:27
  Thank you so much for having me. So could you start by sharing
• 1:33
  with us your personal journey from being diagnosed with CML to
• 1:39
  becoming a prominent patient advocate?
• 1:42
  Yeah, sure. I mean, I was diagnosed as you
• 1:45
  said, with chronic below leukemia in 2001 at the age of
• 1:48
  28, just a couple of years after my study.
• 1:52
  And I was working in technology innovation management.
• 1:54
  So nothing related to medicine. I had no idea and actually the
• 1:58
  outlook at that time was not very good.
• 2:00
  So the therapies on the market at that time were actually
• 2:04
  giving me a 5050 chance to survive.
• 2:06
  So then I found a publication here at ASH actually many, many
• 2:10
  years ago where they were discussing phase three data of a
• 2:14
  new drug which is now imatinib. And it was an investigation at
• 2:19
  that time, but it was not available.
• 2:21
  So actually I found out about it and then found one of the lead
• 2:27
  authors of the publication here was actually a physician
• 2:30
  investigator for Mannheim and he actually offered me a phase one,
• 2:34
  phase two trial with two investigational agents.
• 2:37
  So I joined the clinical study and actually that's why I'm here
• 2:40
  today. So that was probably my journey
• 2:43
  into it. And because I had the privilege
• 2:45
  to speak English well, so I could actually access English
• 2:49
  language publications, and then I started to translate abstracts
• 2:53
  into German and publish that on the Internet that actually other
• 2:56
  Germans have also the chance to understand what was going on in
• 3:00
  science. And that's how I slipped into
• 3:02
  patient advocacy actually, that never had the idea or the plan
• 3:05
  to be in medicine or patient advocacy, but life takes you to,
• 3:10
  let's say, unknown direction sometimes.
• 3:13
  And then I really got involved. I got more and more involved.
• 3:16
  I met other patient advocates with a similar mission.
• 3:18
  We set up a patient organization on the European level to talk
• 3:23
  about policy and to be at the table when the European
• 3:26
  Commission was discussing about new proposal for legislation.
• 3:30
  And I also started to build international networks to
• 3:33
  connect organizations like my German organization.
• 3:36
  And we started to share best practice and develop joint
• 3:39
  trainings. And that's how it how it all
• 3:41
  happened Wasn't planned, but it was very exciting.
• 3:45
  So you have transition from a career in media and technology.
• 3:50
  How have your previous experiences contributed to your
• 3:55
  work today as a patient advocate?
• 3:57
  Well, it's been extremely helpful because in the job that
• 4:00
  I was, I was working innovation and technology management.
• 4:03
  So I was working with a lot of startups that were actually
• 4:07
  building new business models, new media, things like that.
• 4:10
  In the in that kind of time of the early 2000s, there were a
• 4:14
  lot of innovation coming to the media industry.
• 4:17
  So when I worked with the startups, I actually learned a
• 4:20
  lot about about growing small organizations, about the
• 4:24
  challenges of growth that small organizations had.
• 4:27
  And actually what I learned is that the process that startups
• 4:30
  go through are very related to what grassroots patient advocacy
• 4:34
  groups go through. So in the end, of course,
• 4:38
  patient organizations serve a different goal.
• 4:40
  They have societal goals. They want to make a difference
• 4:43
  for patients, but in the end, the process of setting up an
• 4:46
  organization, of growing it off micromanagement, of trying to
• 4:50
  detach yourself from doing everything yourself, trying to
• 4:53
  build teams. I learned a lot from that.
• 4:56
  And I must say that helped me a lot in building patient
• 4:59
  organizations and trying to also grow them to a level where the
• 5:03
  founders were no longer the ones doing everything, but building a
• 5:06
  team and working with others in collaboration.
• 5:09
  I worked in an English language company and that has helped me a
• 5:13
  great deal because advocacy was far advanced in like in the US
• 5:18
  and UK at that time. So I learned a lot and got to
• 5:21
  know other people that were doing similar things.
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  But we're probably some years ahead of us, like the HIV
• 5:27
  community, because they've done patient advocacy 20 years before
• 5:31
  the cancer community really thought about it.
• 5:34
  And so we used a lot what they'd created and we redid that in
• 5:38
  hematology and oncology, which was really cool.
• 5:44
  So you have found that Pat Buckets, it's a think tank and
• 5:49
  consultancy in patient advocacy. What can you tell us about this?
• 5:54
  Well, Pat Buckets was actually set up as a think tank because I
• 5:57
  got involved in so many different activities on patient
• 5:59
  engagement and as a patient and patient advocate.
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  I sat in a lot of steering committees and advisory boards
• 6:07
  and things like that, but very often there were tick box
• 6:09
  exercises. They were not really targeted to
• 6:13
  having a meaningful conversation about what really mattered to
• 6:16
  the patient commute. And everybody was talking about
• 6:18
  patient centricity, but it was a bit like, you know, the
• 6:22
  patient's in the middle, so he's standing in everyone's way.
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  So from that perspective, I wanted to change that.
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  And Pat Focus was set up because we wanted to build on that
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  experience and help both the nonprofit sector, so the patient
• 6:35
  organizations to work more effectively with researchers,
• 6:39
  with clinicians, with medical societies, with pharma.
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  And we wanted to help other healthcare stakeholders to
• 6:45
  engage in a meaningful way with a patient community.
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  And over the years, there were a lot of methodologies developed
• 6:51
  by the European Patients Academy or by A, P, FM, D and others.
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  But methodology is one thing, applying that in practice is a
• 6:59
  different thing. And This is why we set up
• 7:01
  advocates to actually put in practice and help people on real
• 7:05
  projects, on real development, on real clinical trials to make
• 7:10
  patient engagement a reality and really talk about substantial
• 7:13
  input that the patient community can contribute before decisions
• 7:17
  are taken on clinical trial protocol designs on the choice
• 7:21
  of patient reported outcome instruments and things like
• 7:24
  that. So the patients have a lot to
• 7:26
  contribute in the kind of in the definition phase of research.
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  And that's what we want to help with pat advocates.
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  We want to make sure this happens and that both sides,
• 7:35
  both the patient community and the other healthcare stay goes
• 7:39
  really know how to work with each other.
• 7:44
  You were also the director of Apathy.
• 7:49
  Are you still involved in it? Can you explain what apathy is
• 7:52
  and those? Well, your party or the European
• 7:55
  Patients Academy was actually an IMI project.
• 7:57
  One of my first consultancy jobs when I found the path focus was
• 8:01
  actually that somebody approached me and say there's a
• 8:03
  new call by IMI, by the Innovative Medicines Initiative,
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  which is a huge public private partnership of the European
• 8:09
  Commission and industry to actually fund research.
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  And there was a call on educating the patient community
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  about how research and development and how regulatory
• 8:20
  affairs work. And so a forming consortium was
• 8:24
  actually asking me, can you help us submit that grant proposal to
• 8:27
  the European Commission? We had a forming consortium of
• 8:30
  30 different organizations, and I was actually coordinating to
• 8:35
  the submission of that proposal. And we won the bid.
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  And in the end, I was asked to actually coordinate that IMI
• 8:42
  project. So the European Patients Academy
• 8:44
  or your party was set up to train the patient community
• 8:48
  about how R&D works. So did we developed an Internet
• 8:51
  toolbox, which is something like a Wikipedia on drug development.
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  So in late terms, where patient advocates and patients can
• 8:59
  understand how drug development works, the different phases of
• 9:02
  clinical trials, pharmacovigilance, regulatory
• 9:06
  processes, personalized medicine, all these passwords
• 9:10
  that we hear everywhere, but we need to know how that works if
• 9:13
  you want to engage with everyone who's running trials or
• 9:16
  developing new therapies or assessing new drugs in a
• 9:19
  regulatory setting. So that's what we did and we
• 9:23
  also developed a patient expert training course where patient
• 9:26
  advocates can actually take an intense training about all these
• 9:29
  processes. And this is not not only
• 9:31
  e-learning, but it's face to face meetings as well, where
• 9:35
  patients can, for example, in a, in a, in a mock Ethics Committee
• 9:40
  training, take roles and understand what's their role in
• 9:43
  such a committee, How can they actually contribute in a
• 9:46
  meaningful way. That's what we did with your
• 9:48
  party. I'm no longer deeply involved
• 9:50
  now. So after six years, I passed it
• 9:52
  on to my successor, but I'm still involved here and there
• 9:55
  and it has become much stronger. And it's one usually these EU
• 10:00
  projects, you know, it's very hard to sustain them after
• 10:03
  public funding runs out. But your party has been
• 10:06
  successful in having a sustainability strategy and is
• 10:09
  today stronger than ever with support from different
• 10:12
  stakeholders, being involved in new projects and getting support
• 10:15
  from pharma and from all different kinds of sources.
• 10:18
  So it's become a very, it's strong platform for patient
• 10:21
  education when they want to be partners in research.
• 10:25
  Could you highlight what are the most important ways in in which
• 10:31
  patient advocates can help? In terms of research, I mean
• 10:35
  patients can help in defining clinical trials.
• 10:39
  So it's the whole process from actually defining research, the
• 10:43
  research goals and the research question because very often we
• 10:47
  talk about unmet need, but we often talk about unmet clinical
• 10:51
  needs. So what the clinicians think is
• 10:53
  the important thing or what people in industry think, but
• 10:57
  the unmet patient need by be was something very different.
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  They might, for example, not prioritize survival or longevity
• 11:06
  of survival, but they might also look at quality of life, might
• 11:11
  have other topics that they really struggle with.
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  That's why the discussing the unmet need and the research
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  question is very important. And then if you think about the
• 11:19
  definition of a clinical trial protocol, there's a lot when we
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  discuss about inclusion, exclusion criteria, if we
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  discuss about the choice of patient reported outcome
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  measures to measure quality of life or mobility aspects that
• 11:34
  patients from remote locations can actually get to the trial
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  center may be supported by a carer if they need.
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  And those are the conversations we often have in the definition
• 11:43
  phase of clinical studies. And patients have a very unique
• 11:47
  perspective on that because they have the skin in the game.
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  They know what counts, they know what the challenges are.
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  And they also know why patients do not join study or studies or
• 11:57
  why they drop off halfway through because they say I can't
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  deal with a study burden. I need to get on with my life.
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  And we're trying to avoid these situations because research that
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  doesn't deliver results, it's it's, it's not worth it.
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  And that's why we're very interested to work very early on
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  that that's what patients can do.
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  And that's also what your party actually trained about.
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  Because of course, we need to have these knowledgeable
• 12:20
  advocates which understand how clinical trials work.
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  And usually like myself, they have no medical background.
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  So they need to learn the methodology, or at least a bit
• 12:29
  of that to contribute in a meaningful way.
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  Most clinical trials are organized by a pharma.
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  Are they listening? Do they understand this very
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  important contributions can that patients can do?
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  I think they increasingly understand.
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  I mean when we started with your party in 2012, industry was
• 12:50
  called of course, part of that project.
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  But I would say there was no standard operating procedure.
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  There was no process. There was no internal
• 12:58
  understanding of how to systematically involve patients.
• 13:01
  It happened here and there and more in HIV because the
• 13:04
  community did a lot and a lot in a couple of indications like
• 13:08
  breast cancer where the communities were very strong,
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  but it wasn't really established in a systematic way.
• 13:15
  And this has changed a lot over the last 1012 years.
• 13:19
  So the methodologies, tools and frameworks are there to involve
• 13:23
  and more and more companies have established patient engagement,
• 13:28
  patient advocacy departments where they have to find the
• 13:31
  process, how to liaise with the patient community and also all
• 13:35
  the codes to actually safeguard their independence and make sure
• 13:39
  that the patient community brings in their opinion but is
• 13:42
  not unduly influenced by industry.
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  So I think a lot has happened over the past years.
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  If you ask me, are we there yet? We're not there yet.
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  So it's still a long way to go because it happens here and
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  there. And the pace in which industry
• 14:00
  or different companies are implementing patient engagement
• 14:03
  process is different. So some are advanced, some sales
• 14:06
  struggle, some have built centralized departments which
• 14:09
  look at the whole drug development life cycle end to
• 14:12
  end and they are leading the way.
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  And we can in the meantime see that it translates into numbers.
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  So there are metrics to measure that.
• 14:21
  There's a benefit in involving patients because you save a lot
• 14:26
  of protocol amendments. You'd probably accelerate
• 14:30
  recruitment because you get inclusion criteria, right, or
• 14:33
  this or the the study burden and all the patient information.
• 14:36
  We've come quite some way, but we're probably at, I don't know,
• 14:40
  let me judge probably 3040% of where we want to be.
• 14:44
  So they're still work for us. Have you seen a big evolution in
• 14:49
  what patients are able to do in these committees or when they
• 14:53
  are given a chance? Yeah, absolutely.
• 14:55
  Because when I started in 2001, I mean, I had no idea about
• 15:01
  patient advocacy and so on, and I had to learn it the hard way,
• 15:05
  how advocacy works, how research works and so on.
• 15:10
  And over the years with EU party, we have developed
• 15:13
  structured training programs. So we were just a couple of
• 15:18
  people were pretty alone in hematology and oncology to drive
• 15:21
  forward patient engagement. But today we have hundreds of
• 15:24
  Youngs. You know, we've trained up a
• 15:26
  whole community. But I mean, if you look at
• 15:28
  oncology, hematology, they're probably about 230 different
• 15:31
  cancers. There are dozens of
• 15:34
  hematological non malignant diseases.
• 15:37
  And of course every, every community needs knowledgeable
• 15:39
  patient advocates. So I think a lot has happened
• 15:43
  over time to actually contribute in a meaningful way.
• 15:47
  When I started to liaise with EHA in 2010, with Oliega the the
• 15:53
  incoming president at that time, we were taking very cautious
• 15:58
  steps in bringing the patient voice into the EHA Congress.
• 16:02
  The board was quite divided about this, whether it's a good
• 16:05
  idea in a scientific Congress to have patients, you know, and
• 16:08
  have them contribute to sessions.
• 16:10
  So we take took baby steps and then we started the session and
• 16:14
  the next year we had two sessions and the next year we
• 16:16
  had a track. Then we established the patient
• 16:19
  organizations workgroup or EHA did that.
• 16:23
  And over the years we did more and more in collaboration.
• 16:26
  And that kind of trajectory that we had with EHA shows also the
• 16:29
  development that patient engagement had over the years.
• 16:32
  Today I'm as an observer in the scientific program committee, so
• 16:37
  I can bring suggestions of patient advocates that can be,
• 16:41
  for example, act as speakers or as Co chairs of sessions.
• 16:45
  And we can shape up the program that also have a tologist, see
• 16:50
  what are the crucial things for the patient community.
• 16:53
  How can they tailor their research more towards patient's
• 16:57
  needs. And I think we're a very good
• 16:59
  place today and eh as be the pioneer on this and getting
• 17:03
  patients engaged in the medical society.
• 17:05
  So that's very exciting. So you're talking about your
• 17:09
  work and at in the pack, the patients advocacy committee in
• 17:13
  EHA. What other activities does this
• 17:17
  committee have? What what do they do exactly?
• 17:20
  Well, the. PACK has a lot of activities in
• 17:23
  EHA because we contribute to different committees.
• 17:26
  On one hand, the PACK meets to discuss, for example, some of
• 17:30
  the sessions that are held at EHA Congress, if they're for
• 17:33
  example, covering policy topics. But we also have representatives
• 17:37
  in the European Affairs Committee.
• 17:39
  So we discussed quite a lot about policy positions that EHA
• 17:44
  develops together with with the different societies and
• 17:47
  internally because there's a lot of discussion going on for
• 17:52
  example about bureaucracy in clinical trials and others.
• 17:55
  And the PAC members contribute a lot to that.
• 17:57
  We have I think about 15 organs, 16 organizations in the PAC.
• 18:02
  Now the different communities of course have different
• 18:05
  perspectives. They're large and smaller, they
• 18:07
  are more rare or more common. They cover non malignant and
• 18:12
  malignant hematology. They are from diverse
• 18:15
  backgrounds. And the PAC is that kind of
• 18:17
  committee where we bring in all the different perspectives and
• 18:20
  try to support HA in getting those kind of needs of the
• 18:26
  patient community into the different committees.
• 18:29
  So we've been contributing to the IR task force now, we've
• 18:34
  contributed to the scientific program committee.
• 18:37
  We have contributed to different scientific working groups of
• 18:40
  EHA. So the PEC is kind of a, a
• 18:42
  central focal point to bring the different patient umbrella
• 18:45
  organizations together to feed into the different activities
• 18:49
  that the society has. And it has been a very trustful
• 18:52
  and open and and great collaboration over the years.
• 18:59
  So you have a very long experience now in this field.
• 19:06
  From your perspective, what are the most pressing issues that
• 19:11
  EHA should address to advance the patient voice and in
• 19:18
  hematology? If you look at just malignant
• 19:21
  hematology, our key problem is still survival in many of these
• 19:24
  diseases. But if we're all as successful
• 19:29
  as we all wish for that survival is no longer our main enemy,
• 19:33
  then it is a question of not how long we survive, but it will be
• 19:37
  the main question is how we survive.
• 19:39
  So the whole topic of cancer survivorship and long term
• 19:43
  toxicity and optimizing quality of life of living with cancer,
• 19:46
  living with a a non malignant disease becomes a key focal
• 19:51
  point. There's been a scientific
• 19:53
  working group on that. But we still see that everything
• 19:56
  at the moment, both in industry as well as in the clinical
• 19:59
  communities, focused around prolonging survival and clinical
• 20:02
  endpoints and patients are the best experts in survivorship and
• 20:08
  quality of life that can help clinical researchers to choose
• 20:12
  the right instruments to measure what is a meaningful difference.
• 20:16
  And to actually look at that kind of essential triangle of
• 20:21
  the right measures of toxicity, the right measures of quality of
• 20:25
  life or patient reported outcomes and the right measures
• 20:29
  for patient preferences to understand.
• 20:32
  So how does toxicity influence patients, how does it influence
• 20:36
  quality of life? And what kind of different
• 20:39
  domains are really relevant in terms of living with cancer or
• 20:43
  non malignant hematological diseases?
• 20:45
  I think the patient community can really contribute a lot, can
• 20:48
  help also EHA and focusing on that and making sure we get this
• 20:52
  right in upcoming clinical trials.
• 20:56
  What do you hope to see happen in the maybe in future years to
• 21:03
  help patients involvement in EHA?
• 21:06
  What do you want to happen? What I would really like to see
• 21:10
  is that any research in the definition design phase actually
• 21:16
  has meaningful patient input because we can see the value of
• 21:20
  it. We can see it generates better
• 21:22
  studies, it generates better outcomes, It accelerates
• 21:25
  research, It overcomes burdens in a burden in terms of
• 21:30
  bureaucracy and regulatory questions.
• 21:33
  And it also increases patient access later on because further
• 21:36
  down the line, treatments only work if they get into patients.
• 21:40
  So it doesn't help if we design the best studies, but in the
• 21:43
  end, the EMA or the the health technology assessment bodies
• 21:48
  don't understand the data or they don't think there's value
• 21:51
  in it. And that's why I think it's
• 21:53
  essential to have patients involved before decisions are
• 21:56
  being made, before the protocols are being finalized, before the
• 22:00
  studies are being started or at the time when data is being
• 22:05
  interpreted and we talk about patient value.
• 22:09
  That's why I hope the patients are involved.
• 22:11
  And I think we're not there yet. And that's a plan for the next
• 22:16
  couple of years. I think a lot of people have
• 22:19
  understood the concept, but putting this into practice, you
• 22:22
  know, not only in SOP, standard operating procedure or not in a
• 22:27
  process or in, let's say, your mission statement, but really
• 22:30
  doing it on that study where the protocol needs to be submitted
• 22:33
  in next 4 weeks. And where you see kind of the
• 22:36
  timelines moving forward, that needs a thorough plan.
• 22:40
  And I really hope that we can work together to make sure this
• 22:43
  happens in all research that is being done.
• 22:46
  And I think a society like EHA has tremendous influence on that
• 22:51
  because it's where the hematologists are, it's where
• 22:53
  the researchers sit, it's where industry meets and so on.
• 22:58
  And by continuing that pathway where EHA has put the patient
• 23:04
  community across the program in different committees and so on
• 23:07
  is the right pathway. But of course more and more
• 23:09
  implementation is needed that it really ends up in real trials
• 23:13
  that are patient centric and delivering to the main patient's
• 23:16
  unmet needs. What would be your take away
• 23:21
  message for patients that would like to get involved in patient
• 23:27
  advocacy? If you're interested in science,
• 23:31
  if you're interested in supporting the patient
• 23:33
  community, if you're interested in addressing the unmet needs
• 23:37
  towards society, towards researchers, towards companies,
• 23:41
  get in touch with patient organizations.
• 23:43
  They're very strong organizations today.
• 23:46
  They always need help. They always need smart minds,
• 23:48
  they always need people that can actually contribute because it's
• 23:52
  a tremendous amount of work. We have called for patient
• 23:55
  engagement for years and we need to fulfill the demand and get
• 23:59
  patient advocates into the committees doing the work.
• 24:02
  The more people we are, the less work is on each one's shoulder.
• 24:06
  But if you want to get involved, get in touch with a patient
• 24:10
  organization, patient community in your therapeutic area, in
• 24:13
  your disease, and they can guide you and where help is needed and
• 24:17
  where the exciting stuff happens in research.
• 24:20
  Because in the end, we're not only doing this because we want
• 24:23
  to help, we're also doing this because we want to feed our
• 24:26
  curiosity. And that's where research is
• 24:28
  really getting exciting. Just get in touch with the
• 24:31
  patient organizations. Is there anything you would like
• 24:34
  to add? Now I can just encourage
• 24:36
  everyone to have a collaborative spirit.
• 24:40
  I mean, research only works if everyone contributes.
• 24:43
  And that requires sometimes you to take a step back from your
• 24:47
  own interests and try to find common ground because
• 24:51
  everybody's got interests. Researchers want to develop
• 24:54
  studies. They want to proceed in their
• 24:55
  academic careers. They want to run research that
• 25:00
  really ends up at conferences like EAJ and so on.
• 25:04
  Now, of course, the patient community has interests and
• 25:06
  industry has interests too. So it's very important to
• 25:10
  develop a collaborative spirit and work together and say, with
• 25:13
  my sphere of influence, what can I do?
• 25:15
  How can I make sure that we really delivered your patient's
• 25:18
  needs? It's your own job to do that,
• 25:21
  and that's my call. Thank you, Ian for this
• 25:24
  insightful conversation and for sharing your expertise with us.
• 25:28
  And if you like this podcast, please share it with your
• 25:31
  friends and see you in the next episode.
• 25:34
  Thank. You so much.