Has the patient voice silenced others? Balancing voices for better health care
By Javed Alloo (@javedalloo) and Colleen Young (@colleen_young)
Javed Alloo
Colleen Young
#PatientsIncluded is a mantra that many members of #hcsmca live and champion. In particular at medical and health conferences, the #PatientsIncluded cry grows louder and even led to the development of the Patients Included Charter (It will be published on May 1. See a preview here.)
Involving patients as experts in living with their condition and families has long been the missing link at conferences, meetings and decision-making tables within our healthcare systems. More and more organizations, institutions and conference organizers recognize the need (nay necessity) of including the patient voice and several are doing it well.
Stanford Medicine X, for example, is often applauded as a leading example of including patients and family caregivers from planning to presenting and attending the conference to disseminating learnings beyond the conference walls and hallway conversations.
The power and need of patients and family stories are undeniable. But what if the pendulum swings too far? This is what we both observed at Stanford Medicine X last fall. Several physicians shared with Colleen privately or hesitantly in public that they did not feel comfortable asking a question in the plenary hall at Medicine X following patient presentations and panels – that as an MD they felt they shouldn’t. Javed noted in his article in Future Practice:
“…There are patients present for nearly every moment onstage – a conscious expression that health care can’t be effectively conceived without keeping its purpose (health for patients) as the central focus.
Sometimes this atmosphere makes conversations difficult. I fear that the pressure to be politically correct might prevent honest discussions about the barriers to delivering the desired kind of care. …”
Our purpose is not to single out Medicine X, but rather use it to illustrate a situation that may be happening “off-stage” as organizations forge ahead with patient and family engagement to improve healthcare delivery.
Health is a personal experience. Health care is a team effort. How do we reconcile the two?
“Nothing about me, without me” makes a lot of sense, given that the main purpose of a health system is to meet the health needs of patients and families. Figuring out what “health” means to a patient and what health goals are important helps identify what the patient, their supporters, the health providers and the health system need to do. If we don’t understand this, the health system funders (the provincial governments in Canada), institutions and providers might make decisions and work in ways that don’t accomplish the health goals most important to patients. And making formal room for patient and family views can help overcome situations where people feel intimidated or unable to speak up during the course of their individual health journey. All in all, it seems pretty logical to include all the people affected by health care decisions in these conversations.
But has the power of the personal rendered mute others who share in the health experience medically? When faced with a patient’s intense and emotional narrative of their health experience, institutions and providers may feel uncomfortable questioning the broad applicability of the goals an individual patient describes, or the priority of addressing that goal rather than other competing patient health outcomes.
On April 29th at 9pm ET (time zone converter), #hcsmca would like to flag an issue that may be happening and may not have yet bubbled to the surface of public conversation – before the pendulum swings too far. Join us to seek answers to the following questions.
T1: Has the rise of the patient voice silenced or enabled the other voices in healthcare? How?T2: With the rise of the patient voice is it more difficult to have an unbiased discussion around strategies and priorities when identifying health solutions?T3: Are the sustainability of demands on providers and the system given necessary weight in these joint discussions?T4: How might we create an environment that empowers patients and doesn’t silence other voices?
- T1: Have you been involved in healthcare system change or research where a representative voice was silenced? #hcsmca
- T2: How might patient advocates/activists have inadvertently muted voices? Whose? From which healthcare sectors? #hcsmca
- T3: How have public conversations about health solutions changed since patients have become more vocal online and off? #hcsmca
- T4a: What new “rules of engagement” between providers and patients are emerging? #hcsmca
- T4b: What new rules of engagement need to emerge? #hcsmca
- T5: How might we create an environment that empowers patients and doesn’t silence others? #hcsmca
Read the April 29 #hcsmca transcript.
Colleen Young 
Thanks Dr. Javed and Colleen for this provocative question. I’m not available to participate in tomorrow’s #hcsmca tweetchat, but Colleen asked me to add my two cents worth here instead.
As I mentioned to her earlier this morning, the question itself (“Has the patient voice silenced others?”) reminds me at first blush of the heady days of my early women’s movement involvement during the 70s in Vancouver.
At that time, men were rising up en masse in a reactive pushback: “Geez, we’re afraid of how to even talk to women anymore for fear of getting blasted by yet another women’s libber!” After generations of not having a voice at the table (any table), women’s emerging voices about their experiences felt uncomfortable and threatening to many men.
In my own experience attending Medicine X in 2012, I would hardly have described non-patients there as feeling uncomfortable asking questions in the plenary hall. In fact, docs/nurses/tech types dominated onstage, at the audience microphones and in the corridors.
Even in the Patient Lounge where – exhausted and feeling sick – I sought respite one day, I encountered a Canadian physician lying on the (patient) lounger next to mine eager to enthusiastically tell me all about his opinions/views/feedback about the conference.
So I’m wondering now: could your question reflect simply what sociologists describe as the ‘dominant group’ (physicians) holding power in a given society (health care) being disturbed by those who have historically had little power to dare question that dominance (patients)?
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Thank you for leaving a note Carolyn.
You draw an astute parallel from the women’s movement. In my opinion, that history can teach us a lot with respect to the patient and family-centred care movement. I’m not well versed enough in the trajectory of “movement” behaviour or cycles, which is exactly why I wanted to explore the topic with #hcsmca.
When the group who has historically had little power rises to claim its rightful place, is there a common pattern or trajectory that repeats itself – suppression, tokenism, an imbalance pendulum that swings from side to side until it finds the right balance or not?
When the historically under-voiced find a platform upon which to speak and ears that believe they are listening, do siloed conversations continue, but go underground?
Questions worth asking.
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I appreciate Carolyn’s point, and agree with the observation that there is a power challenge happening, resulting in the statement, quoted above, “Sometimes this atmosphere makes conversations difficult.” My observation of MedX, backed up by the Symplur data presented in 2014, is that the patients actually do outnumber the physicians, although patients don’t account for a majority of the audience (lots of other interested types, like myself, are also there). Having this robust a mix, however, does make some conversations feel slower, if your goal is to get to a specific endpoint. Much like a cross country road trip, MedX is set up to be more about the journey, and not the destination.
Colleen, I think your question of whether or not siloed conversations go underground depends on who holds the power in the conversation. That is to say, I doubt the individuals/groups with more power are likely to go underground – they’ll likely just exercise an option to close the doors a little tighter, making it harder to participate.
In the past few days I’ve been thinking a bit about two articles that to me feel related in their consideration of where we are going with regards to patient empowerment and the surrounding movement that has emerged. One is a thoughtful piece about change in the healthcare system, including a nod to the value of having each individual have their voice heard, and that the lack of a unified voice does not indicate failure by any means. The second article makes an attempt to define three types of patients; essentially, passive, shared planners, drivers. What I think people forget sometimes is that there’s room for all, but all need to have some room.
All this to say there’s definitely a movement afoot, and with that comes ongoing debates about who’s voice is heard, where it is heard, and what should we do about it as a result?
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Great points, Carolyn…it’s definitely a complex period of change, and all of the people involved in health care today (patients, doctors, nurses, social workers, etc) all come to the table with all their previous learnings from prior experiences and roles. Not only in health care, but other contexts, it’s often these pre-conceived notions, expectations and looked-for patterns that can limit how open we all can be to the new opportunities ahead of us.
Often times, the best outcomes, a meeting of minds, emerge when we attribute the best intentions to all the people involved, while addressing the gaps and challenges experienced when receiving and delivering health care. How often does that happen?
I hope that, tonight, through the chat, we’ll be able to share and learn our experiences. Ultimately, that’s what we need to help us figure out how we can, together, reach the goal of effective patient-provider parternships for better care outcomes and experiences.
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After having written this blog post, I was made aware of 2 related blog posts that I recommend reading.
Paying the Price: The Emotional Labour of Patient Leadership by David Gilbert @DavidGilbert43
– also see the comments
Consumer Lab Testing: Will the Doctor be Out? by Bryan Vartabedian @Doctor_V
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What an interesting topic, Colleen and Javed — thanks for opening the discussion. I believe we are seeing a movement taking hold that may be following a similar course to other movements, however there is a complexity in the separate silos of healthcare that may not be present in other group trajectories. Those with a lack of power need not only a voice but also to be heard — often this is where we collectively fall short (we are great at talking but not so skilled at listening). If we do not have the forums to listen then we will continue in our own silos and systemic change is unlikely. Personally, I feel that Medicine X is breaking new ground in terms of inclusive health care conferences, and I am honored to be a part of it. In the discussion about patient empowerment, we must not forgot the silent majority of patients, nurses, doctors, caregivers and others are not actively in the discussion due to the disparities that exist in health care, lack of technology, education, or perceived need — how can a movement toward a culture of health include more voices and how can we come together to listen?
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Zing! You’re so right Pam. What use is the rise of the under-voiced if decision makers and others at the table (conference hall, boardroom, etc.) are not listening?
It’s been my observation that clinicians, health administrators, etc. once exposed to the patients stories – either through video, blogs, forums or live presentations and meetings – are presented with a reality that expands their view of the “living with disease” experience. Traditionally, these are not the aspects of living with disease that patients present in consult rooms. As they take in the fuller picture of the patient experiences and apply them quality improvement for all, does this result in reflection that can be perceived as (temporary) silence?
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Not to mention (but I will) patients who either feel silenced or tactically opt for silence because they might have viewpoints that challenge the dominant discourse among powerful empowered patients. See, Pam? I didn’t use “narrative”! Depending on how feisty I feel, I might raise this issue.
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So true, Pam. If we don’t find a way to create comfort for all the people to the speak and be heard at the table, then the conversations will move off-line, which will only slow down progress on the inclusiveness front. Finding out what might push those talks into the shadows is It’s a delicate period, and experiments like Medicine X are important steps in the right direction. Learning what worked well, and what didn’t, in those experiences are important to our learning journey. Really looking forward to more of your insights during the chat tonight!
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The move to have patient voices involved on research teams from the stage of setting the question and on to completion of the project is another area where patients are starting to be seen and heard.It is a relatively new phenomenon, imposed by the funding agencies.
Some research teams greet these new members with enthusiasm, others do it because they must. At the start of something new both sides are tentative and wondering how it will work, how they can work as a team with someone unfamiliar. The patient(s) involved have a steep learning curve – it’s not just the facts they need to learn; it’s a whole new culture.
Change is difficult. We need to find new ways to work together and to add the voices of all of the stakeholders in healthcare, even the relatively unorganized voices of patients who are barely beginning to feel comfortable in opening their mouths.
There are no well traveled routes to patient engagement yet in Canada. Here we see powerful patient engagement speakers imported from other countries speaking to specialized audiences of professionals.
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The one point I would like to raise – as I have done in the past – is the myth of the patient voice as a monolithic and unified concept.
We need to remember that patients are individuals with myriad concerns and interests. When these relate to their disease or condition they often find a common cause with others in a similar position.
But it is always risky for others to take an individual patient, invite them to a conference or put them on a panel and present that they speak for the entire patient population. Similarly, those who speak for patient organizations may or may not have other considerations or interests behind them.
That is not to say that powerful engaged patients cannot make very valid points that need to be heard (Carolyn at the start of this thread being an excellent example). Also, there is much validity in discussing the interaction between those who are playing roles of patient or physician or other provider in the health care system and how these roles are changing.
But I just want to caution about talking of “The Patient”.
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Pat, I couldn’t agree more! I have long said that I cannot and do not speak for all patients as if we were one homogenized voting bloc. As Dave de Bronkart (himself the poster boy for The Patient Voice as a person who makes his living speaking at conferences) warned in 2012:
“People need to remember that although I advocate FOR listening to patients, I myself am only one – and I was only sick for six months. Every time there’s a patient panel, the audience experience broadens and improves – but I should never be the sole patient voice.”
In many ways, this is why I now prefer attending conferences with a press pass. I can interview researchers, translate medspeak into plain English, cover the (women’s cardiology) topics I think my readers will find most useful, and be “listened to” by thousands of readers as opposed to being The Patient Voice onstage speaking to a small room of conference-goers.
Thanks for this important reminder!
regards,
C.
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Pam, Pat and Carolyn,
Thank you for bringing up the challenge of representation – one story, one patient cannot represent all.
We cannot say The Doctor or The Social Worker any more than we can refer to The Patient.
Or can we? Does choosing a profession assume a homogeneity where patients are managing a situation of circumstance that were/are beyond their control. Also medical professionals have associations to help them present as one voice where patients may not.
Javed and Pat – perhaps you can help delineate where associations such as the CMA and OMA serve that role.
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Thanks Pat, for raising a really important distinction: in the end, the care experience is between individuals, though collectives of patients, physicians or other providers can help promote policies, perspectives and support the ability of providers to participate in the change…
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Ok, just read this after I left a response to Pam’s comment. Will underscore that it’s not just providers or payors or researchers who might have a monolithic view of “the patient.” I’ve observed patients superimposing this on other patients. Nuance. We need more nuance!
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Ok, now I’m really awake and hoping to remain so long enough for this chat. Great topics. As ever, you’re getting an important conversation out of the hallways and into public. As ever, I’m grateful to know you.
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I’m looking forward to the chat shortly. There is so much to cover here. I think there’s a problem that as patients we are so recently asked to the table that one voice is mistaken for the voice of many. Until we have more representation across the board – in research, in places of power at health institutions and even in our own care, this will keep happening. I agree with both Meredith and with Pat. What we need is more voices showing the depth and breadth of experience & needs. There is no ‘The Patient’. There are patients and families. And where I sit, our needs are often not put first, our voices are not asked for in true collaboration. When asked to speak, we are often asked to speak as ‘the token’ patient and this is not a position of power or influence. We need to speak with ‘the system’ not at ‘the system’. I do believe there is change brewing and there are those that are seeing value in our voices but we’re not there yet.
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Great thoughtful responses all. Afraid I am still somewhat jetlagged and will have to digest the main party via the amber-frozen archived comments
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Really great blog post and comments. I so appreciate this. I can’t recall ever seeing this talked about anywhere else and it needs to be.
I can see experiences I’ve had and valuable things, nuances etc., i’ve learned, shared in these comments. Said so well I’m mostly listening. Just wanted to say how much I appreciate and am grateful for this.
This is a conversation, I think, which needs to be ongoing and evolving forever. I’m so happy to see it started by all of you. Thank you.
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I’d like to think I have a good view of the patient movement. And, if that’s the case, this post tells me the Movement is on the right track.
I imagine there was a time in executive suites of companies where the old white men says “you know…this diversity stuff is good and all, but a lot of them now want management jobs and we’ve gotta put a stop to that.”
and I suspect there was a time in the women’s movement when a group of good ole boys said: “listen, working outside the home is one thing…but now they want to vote! We simply cannot have that.”
And, hopefully in a short time we’ll look back on marriage equality in the US and say “remember when we thought it wasn’t ok for anyone to marry?”
So today, when we hear that maybe patient voices are too loud, I think: we’re on to something here!
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I am shocked by the suggestion that the pendulum may have swung too far toward giving patients a voice. Wow.
Physicians who are uncomfortable asking questions in the plenary hall should take a hard look inward for the source of their insecurity and self-doubt. They should also realize that their discomfort is likely the welcome sign of an opportunity for growth. It is a great thing if only they can bear it.
Active patient involvement and participation at Stanford Medicine X (from planning to execution) is one of the core reasons for its success. It is also the way of the future.
We have grown accustomed to the paternalistic voice of doctors who claim to know what’s best for us. Turns out it’s not always the case.
If we listen to the patient, we may actually learn why.
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Welcome to the conversation, Nick and Hugo.
This has been such a valuable conversation, especially during the #hcsmca chat last night. No one is questioning the value of patients and families having a voice in health care change and improvement. We are definitely “on to something”. The reality of the patient experience when presented so powerfully can result in silence from others. Taking a good hard look at the reality of the patient experience as presented by the patient is new for many, even those who provide care.
The silence however is often a result of reflection, not of resistence – especially in an environmment like Medicine X. I think it is relatively safe to say that attendees of MedX are drinking from the “for me, with me”, patient-led Koolaid. What better place than MedX to make these observations to recognize the work yet to be done once we return to environmennts that are not so far along the patients included pathway.
Silence doesn’t equate rejection. In many cases, it can be reflection.
I embrace this pause for thought and think we have the opportunity to help answer their response when providers, policy-makers, systems administrators are ready to say and ask “Wow. That was powerful. I’m starting to see. Where do we go from here? Help me catch up to you.”
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Thanks for that useful “silence doesn’t equal rejection” clarification Colleen – although I did cringe at the use of your word choice: “drinking from the patient-led Koolaid”.
Ouch. Popular uses of this unfortunate phrase are typically pejorative dismissals, meaning “blindly following” – a negative connotation” as defined here: http://mentalfloss.com/article/13015/jonestown-massacre-terrifying-origin-drinking-kool-aid
I’m sure you didn’t mean to imply that!
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Thank you for giving me the benefit of the doubt Carolyn.
I definitely did not mean the negative connotation. I was unfamiliar that the phrase “drinking from the Koolaid” was typically used as a pejorative dismissal. Rather than blindly following, I meant it in the sense of people’s sense of belonging to a group with a strong common interest, passion or motive.
I now know better.
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I’m thinking you may have meant something like “singing from the same hymnbook’…? ;-)
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Having been at a lot of conferences and meetings where healthcare professionals dominated on panels and from the floor, it is refreshing that patients are increasingly speaking out about their own experiences. Those healthcare professionals who are uncomfortable participating should think about why they are uncomfortable, then learn to share. Of course the same goes for patients as well!
Also, I would like to point out that we the taxpayers fund the healthcare system through our taxes, while the provincial and territorial governments deliver healthcare, which is a different thing.
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