Navigating the maze together: a patient’s perspective

“The strength of a common agenda”
– John Ioannidis, Stanford University
Lost in the Maze? Navigating Evidence and Ethics in Translational Neuroscience, Herrenhausen Conference, Hannover, February 2018

By Rebecca Morrison

Communication and Trust

From the opening session, it was clear even to one for whom ‘translation’ hitherto had been the domain of moving from one language to another and ‘mazes’ the realm of Greek myth, that communication and trust, as so often in a medical setting, are the nub of optimising the moment of transition from preclinical to clinical.

Also, that moral compasses, curiosity beyond one’s immediate viewpoint, rigour in trial design, and transparency in reporting every stepping stone along the way are prerequisites.

Ulrich Dirnagl’s and Mark Yarborough’s rallying call last November in Nature was expanded here: never lose sight of the patient when structuring trials and moving from animal to human models in early clinical trials with their sobering rate of ‘success’. The hopes and dreams of researchers must be balanced with the hopes and dreams of patients.

Where is the patient in the maze? Can we become more fully involved, and hold with you that Ariadne ball of thread?

As a patient representative (Multiple Sclerosis in my case) on a panel, the urgent, excellent debate of those days set me thinking. I kept returning to a sentence in keynote speaker John Ioannidis’s address: “the strength of a common agenda.” And to a discussion with Alex Kolodin of John Hopkins on a simple idea conceived by Baltimore colleague Peter Pronovost, put into practice to great effect: his medical checklist in intensive care, introduced first to lay readers of science in Atul Gawande’s New Yorker piece. The morning’s recommendations for ensuring best practise in preclinical trial design and reporting rang similarly true.

A place for checklists within researcher-clinician-patient discourse?

It seems to me that three checklists are necessary in this scenario. For the landscape of scientific research is a baffling and alien one initially to many of us patients, like space exploration or understanding the rules of cricket. Three checklists for three staging posts on the road to trial participation, recognising limitations of resources, including time, but believing idealism is a permissible place to start and return to.

1 – Laying the ground

This is a checklist I personally would have welcomed at the diagnosis confirmation consultation, while recognising humbly that all conditions are different, and each patient will wish to dive more or less deeply into the science and wider reading. Also, that time is not something all patients have, some being thrown immediately into enormous life-changing decisions.

  1. Provision of an information pack and discussion of some elements within it – remember, we only partially take in what we are told at diagnosis. This pack will contain information about: the disease; treatments currently available (if any), first-line and supportive; a list of associations supporting that patient community; a ‘helping yourself’ section – encouraging the patient to do all we can, with exercise, nutrition, and other supportive elements, whatever can keep that spark in the eye; further reading recommendations; information on preclinical research and clinical trials, introducing us gently to this new landscape, and how to find those relevant to us.
  2. Arrange a second meeting to run through issues raised after time for digesting – I know, resources are stretched, but might not the longer-term benefits be sizeable? This a chance for that all-important communication between doctor and patient, forging trust, learning one another’s vocabulary. And, yes, a chance again to speak of the wider discourse around research, in as unpressurised a way as possible.
2 – The poignant and vulnerable nature of Informed Consent – a dance of hope and despair, and the importance of language

For me, I’ll be carrying the words and voices of Jodi Halpern (Berkeley) and Scott Kim (National Institute for Health, USA) in my head now when facing decisions of trial participation myself or if my loved ones are. They brought emotional depth to the individual stories of their work. Jodi asks her patients to consider: “What are you giving up to be on this trial?” Scott Kim asks his: “What is your main reason for being on this trial?” We must ask ourselves: Do we understand what the trial is about? Do we understand the difference between being a patient and a research subject? Have we adequately considered the risks and the benefits (the concept I bring to all areas of decision-making in my life now)? Or to put it in checklist form:

  1. Ensure the patient understands what an early phase clinical trial is and what it is not.
  2. Talk through what the trial hopes to achieve; be upfront about the chances of ‘success’ – we can take it! And we are curious.
  3. Ask Jodi’s and Scott’s questions: “What are you giving up to be on this trial?” and “what do you think you may be gaining?”
  4. Talk openly about hope and its flipside, despair. Remember that just as you would be, we patients, too, are considering participation through a variety of identities, concentric circles of impact: on oneself; on one’s family and loved ones; and the collective, the generations that come after.
  5. Arrange that second meeting to discuss after time for digesting, if that luxury of time exists (and again, I know, stretched resources – but for long-term rigour and moral compass surety, a priority perhaps?)
3 – Count us in!

The undoubted tug from all sides seems to be towards optimising communication and trust in each step of bringing research to the translational stage: and I believe many patients would welcome the chance to be part of this discourse. The disease that is part of our lives is not to be our defining identity, no, and we will strive to live the fullest lives we possibly can, but if there is something helpful we can do to support your work, and ultimately thus contribute to best practice flourishing with all the rigour and care personified at Herrenhausen, count us in. What shape might this involvement take?

  1. Bring us into the lecture halls and seminar rooms: let your students talk to us, and get to know the stories and people behind the illness.
  2. Invite us into your labs: let’s meet one another.
  3. Introduce us to the differences between preclinical trials and clinical trials: familiarise us with your language, and we’ll familiarise you with ours.
  4. Bring us up to speed at the various crossroads and thresholds being currently reached in gene therapy, stem cell therapy, personalised medicine, regenerative medicine, and immunology: we are truly interested.
  5. Importantly, make sure that we really understand the difference between being a patient and being a research subject, and let’s explore communication and trust together.

The beginning of a beautiful friendship?

Jonathan Kimmelman (McGill) made an eloquent plea for an end to “patient tokenism”. From this patient’s perspective, this discourse with its multifaceted perspectives is timely and essential in an exciting age in medicine inextricably interwoven with ethical complexities.

Like my fellow bloggers, I, too, left Hannover full of optimism, motivated by the sheer hard graft as well as the passion and vision of the assembled company, buoyed by the energy of a masterclass in international collaboration.

With moral compasses rigorously set, and listening, sharing, exploring with curiosity, hope and realism, I do believe we can make this “common agenda” a reality.

Thank you to all at the Hannover conference.

Rebecca Morrison is a Scottish-born writer, literary critic and translator based in Berlin. Her blog – p.s. It’s MS – will launch on October 8th, just ahead of this year’s ECTRIMS conference in Berlin.

Conflicts of interest: None to declare

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