Yesterday I was at a monthly TelePresence meeting of the Person Centered Health initiative, a group that started in Canada that’s closely aligned with the Society for Participatory Medicine. At this meeting, some expressed concern that the memes of “person-centered health,” “patient-centered healthcare,” “participatory medicine,” and the like are becoming so overused as to become meaningless. That is, practices and healthcare organizations are claiming to espouse these principles, when in reality they don’t practice that way. Put another way, they talk the talk but don’t walk the walk.
That’s just plain wrong. You shouldn’t get away with pretending to be patient-centered, any more than you should get away with pretending to be in love. So let’s get specific.
My view is that shifting to patient-centered care entails cultural change, which is difficult. Getting there requires a multi-faceted approach. Part of this involves spreading the meme, but this must be followed by education of all stakeholders in the healthcare system. One way to accomplish this is by providing concrete examples (“you know your practice is participatory if…”). Then we’ll be able to measure practices against this list of attributes.
Let’s crowd-source it. How do you separate the participatory from “empty words” people? Here is my starting list of the most important attributes.
- Do you use an electronic medical record?
- Can patients can see their records online?
- When the EMR is being used in the office, is the screen is oriented so patients can see the record while the clinician is using it?
- Are there internet-connected computers and/or free wireless access available for patients/families?
- Do you have a patient/family advisory board?
- Do you listen to them?
- Do you provide online patient services: education, tools, prescription requests, appointment requests, etc.?
- (Hospitals) Do inpatients have free, reliable and modern entertainment systems?
- Can patients/families contribute to the medical record?
- Are patients encouraged to seek health information on the web, offered advice, and given helpful answers to questions about what they find?
- Are intake forms online, prefilled when possible? (Not handwritten on clipboards)
- Do providers appreciate that most care takes place outside the office/hospital? (See Doc Tom Ferguson’s famous “steal these slides“)
- Are providers comfortable saying “I don’t know—let’s find out together”?
- Do providers practice shared decision making with patients and caregivers?
- Are patients encouraged to interact with their providers using secure messaging and other tools besides the telephone?
- Are patients always informed about test results?
- Does every encounter end with the provider asking if there are other questions or concerns?
What do you think? What issues would make you say “BS – you’re not participatory”? Comments please.
(Also: join the Society for Participatory Medicine to support the movement; participate in meetings of the Person Centered Health Community.)
I think this should be the #1 criteria: take a random sample of the patients under active therapy at the center. Ask patients, “On a scale of 1-10, how are you doing?” Then ask the center: “On a scale of 1-10, how is each of these patients doing?” Patient centered doesn’t mean always getting it right (i.e., not all patients have to rate a 10), but there should be good correlation between what the patients say and what the center thinks. This is the difference between evidence-based and patient centered: knowing that you do what evidence says works best in most cases doesn’t mean that you know that the therapy actually worked in specific cases.
Dr. Ernest Codman of Mass General in 1914: “Every hospital should follow every patient it treats long enough to determine whether the treatment has been successful, and then to inquire ‘if not, why not’ with a view to preventing similar failures in the future.” I’d add: and correcting your failure in the present.
I’m a technologist charged with capturing and studying medical information, I’ve been a member of HIMSS, AMIA, and ATA. In reality, it doesn’t matter how you achieve being patient centered. It doesn’t take specific technology or protocols. It takes actually being patient-centered.
> it takes actually being patient-centered
Perfect! Love your way with words.
Great post! I’d add a question reflecting the importance of non-medical aspects of each patient’s life. Something along the lines of: Do you know something about each patient as a person (not just as a patient)? I’m thinking of things such as religious beliefs, family context, professional interests. Not sure how to pose as a brief question. In The Quality Chasm, the IOM defines patient-centerd care as “respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decision.” For me, “participatory” goes beyond that, but it’s a start.
Overall, I’d lean this list more toward values and less toward the details of technology. I don’t mean to jettison online access to records, etc., but I’d go first for stuff that reflects the quality of the clinician-patient relationship.
Fascinating question, which sends me back to reread Don Berwick on patient-centered care:
and the Mission & Vision of Southcentral Foundation in Alaska:
This is sure to be a great conversation!
Thank You Danny!
Your post reminds me one more time that it is important to differentiate between Patient-Centered Medicine and Participatory Medicine. The 2 terms are NOT interchangeable and represents 2 different visions of the importance of the patient as major decision maker in their care.
I’ll write my next post about it.
In the meantime Susan Carr wrote a nice summary:
“In The Quality Chasm, the IOM defines patient-centered care as “respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decision.” For me, “participatory” goes beyond that, but it’s a start.”
To me, Participatory Medicine goes far beyond that IOM definition. It does no longer tolerate the paternalistic vision of medicine that has been the model of care from the Industrial Revolution to the beginning of the Network Revolution.
You also cannot talk about Participatory Medicine without mentioning that mos tof medical care is done as self-help, without any direct interaction with a HC professional. Until now HC professionals have usually dealt with this trap by avoiding asking questions about the ODLs. In the coming world of PM, HC professionals will have to integrate the ODLs in the various processes that help them be the expert advisors they really are.
Gilles, every time you talk about “without direct interaction with a healthcare professional” I know what you mean but I implore you to think about what life is like when trouble strikes and people can’t get the care they want from professionals.
Regina Holliday’s post today tears my heart out, talking about growing up without access to care, going to bed with broken fingers, and the 11 year old who talked in DC this week about his mother’s death due to no care access. And our ACOR friend Kristy who’s going through kidney cancer (dying, she says) without insurance.
I know you’re obviously in favor of patients having what they need. I just want to be really careful to not give people the impression that participatory medicine means “Who needs doctors??”
Hi Dr. Sands,
I participated via WebEx at yesterday’s meeting too. It remains baffling to me that healthcare can be anything but patient-centered. But alas, we know it to be otherwise.
I did appreciate the syntax shift modifying the term to people-centered as it does take a team. Healthcare admins, professionals, support staff play a role in greasing the cogs. One of the patient participants claimed she doesn’t like the label “patient,” if anything she’s impatient.
I would like to add plain language to your list of attributes necessary to ensure people-centered health. Plain language for everything from consent forms to prescribing information, from instructions of what to do in an emergency to where you can park, from where to line up to directional signage. As one participant pointed out: pity the confused patient looking for the x-ray department when all the signs read “Diagnostic Imaging!”
I refer to one of my health care heroines, Maggie Breslin, at Mayo Clinic who always brings the notion of being patient-centered back to the core: having a conversation. In her Mayo Innovation Symposium presentation, she makes clear that good health care delivery is all about having a conversation, that conversation is how people determine quality and value. She emphasizes that what patients value most is that doctors take the time to talk and to answer their questions. Hear her say it powerfully here (scroll the menu on this page to find her prosentation): http://centerforinnovation.mayo.edu/transform/2009/index.html
If you aren’t talking to your patients, you aren’t patient-centered.
Follow her blogs here: http://blog.centerforinnovation.mayo.edu/author/mbreslin/
I’m looking at your list from the perspective of a participatory nurse-midwife. I deal mostly with healthy women experiencing a normal physiological phenomenon, but who need my assistance to help with decision making and intervene judiciously and/or coordinate a referral of care if complications develop. The emphasis on medical records in your list (although I totally get it) doesn’t resonate with me as the “heart” of a participatory approach to care. I think the heart of participatory care is dignity and acknowledgment that people experience wellness and illness in the context of their lives (with all that entails – family, values, culture, resources, hopes for future, etc), and we only interact with them for very brief – but potentially very meaningful – encounters.
I would add to your list something along the lines of “not using expensive and/or risky technology to achieve outcomes that the person his/herself can achieve”. For healthy people experiencing normal physiological processes(e.g. birth, menopause, digestion, etc.) best health will be achieved with care that promotes and facilitates the natural process and avoids interfering with it. When intervention proves necessary, providers should begin by working with the woman to enlist her body’s own abilities to self-correct. Only when these efforts are insufficient or a complication is urgent do medical or surgical intervention become necessary.
This is not “intellectual” participation like reading medical records and accessing online tools for decision-making, but physically participating in one’s own wellness is just as important, and as care providers we can facilitate or hinder that.
In practice, for me this means, for example, avoiding practices that hinder a woman’s ability to move her body, vocalize, express emotion, follow her body’s urges to push, etc. If labor slows down or the baby seems to be showing signs of distress, assuming the situation isn’t urgent (a rare exception), I begin with simple “self correction” approaches like hydration or a change in her position. Obviously, sometimes those approaches don’t fix the problem and interventions like pitocin or a cesarean become necessary, but usually letting women’s bodies do their own thing on their own time (with excellent support so they don’t suffer emotionally or physically and close monitoring so we can intervene as needed) is safer and more effective.
This is quite different from the typical paternalistic approach to labor and birth care, where the women is immobile and care is done “to” her, pitocin is used in more than half of labors, and cesareans are used to achieve one in three U.S. births. Research supports a low-tech, midwife-led approach to care (which also happens to be the international standard of care) because it produces healthy moms and babies. In my experience, it also produces e-patients. Women who have actively participated in labor, even if it didn’t unfold how she had hoped, *totally* become empowered in both health care and self-care subsequently.
Thanks for this. I noted that the webscast at:
is not yet available. As I did not attend/was not aware, it would be most wise if I listened to the meetings comments prior to doing so.
However, as a Canadian involved with patients/caregiver across the country as well as a variety of international groups the question I would ask plainly is this: “who is on ‘first’ (base)?? A healthcare professional once said to me: “We all want the same thing” but the question remains if this is actually true and if so, in what order. Powerful lobbiests profess to speak for citizens/patients/consumers but there is ample evidence that they do not. Through many years of through much suffering of others, I have a utopian wish and need to actually break down these barriers. We also need to forget the language issues of ‘citizen vs patients vs consumer’ because until there is a new word in the English language I believe we are getting hung up on symantics which in the larger picture just do not matter.
For instance, the Ontario Hospital Association advocates for their members, the hospitals. The Ontario Nurses association advocates for their nurses. Both are at odds with each other – power games and this leaves patients where. So, the b.s. list is long. It has been mentioned not in just isolated cases that a patients’ union is required to finally give some power of influence to the people.
For the many reasons given in the b.s. list this is why healthcare worldwide is such a mess. Do patient admire and respect their healthcare professionals? Of course and overwhelmingly so and they are not afraid to defend their health care professionals. I personally have excellent doctors but I also know that they too have to fight the systems.
Informed Canadians (patients) will tell you that there does not exist in Canada patient centered care. This issue will continue to exist because governments are at odds with healthcare groups and healthcare groups, with few exceptions, allow active and to use the new buzz word ‘meaningful’ input from patients. This also is reflected in the research where the goals of patient care and improvements have failed because patients were not involved or their views were not in their own words. Subsquently and as we see it today, interventions and concepts are not accurate, particularly in QOL. So the answer is the fine line between a concentrated effort in including patients not just as an apparent patient-centered care but in all facets of decision making.
One example of what I am trying to say was via a unscientific poll recently (see blog) on women undergoing pelvic exams while under anesethesia – without consent. Turns out that it is not a gender issue and McMaster University wrote a Letter to the Editor (large national paper) attempting to dispel this practice as a myth, according to hcps who responded to the poll, this practice does indeed exist today. So, one small example of b.s..
Accolades to the many who are jointly trying to just do the best, but as we know it is not enough. I think the most progressive item I have seen recently is through the Journal on Participatory Medicine but I do hope that we, as patients and caregivers can escape the bureaucracies which often follow. I will look at the webcast when it is available, with thanks.
Today was a message from the organization Canadian Doctors for Medicare which may provide a further views/perspectives. The last paragraph is the most pertinent to this discussion. The Romanow Commission’s (2002) original intention was to survey (nationally) the public/patients/consumers, however, many organizations and institutions were subsquently included. I made the only public presentation on ovarian cancer – no institution nor any non profit organization did so. This is definitely not intended to be self-congratulatory by any means but the message was clear then as it is now. Sorry that this is a ‘downer’ but it is reality – through the patients’ eyes.
“Canadian Doctors for Medicare
e-Rounds No. 27
March 15, 2010
Franklin White and Debra Nanan. â€œA Conversation on Health Care in Canada: Revisiting Universality and
the Centrality of Primary Health Care J Ambul Care Management 32(2): 141-149
Throughout the 80’s & 90’s at both national and provincial levels, Canada and its Provinces/Territories have repeatedly reviewed and studied their respective health care systems. The last commission was conducted in 2002 by The Honourable Roy Romanow, former Premier of Saskatchewan. Public input has been invited and included in the analyses and recommendations of these former reviews. This month’s e-Rounds is focused on the public consultation used in British Columbia, which concluded in July 2007. The purpose of the paper was to review the process and content of the consultation on BC’s Medical Services Plan, with particular emphasis on primary health care. In any given year, 80% of residents have contact with primary care, making this a critical component of necessary health care services.
The consultation process included 78 focus groups and other meetings involving patients, providers, and the public. There were also electronic submissions and an international symposium, resulting in a final document of over 1500 pages. The consultation occurred in three streams (public, health professionals, and health innovation) over a 6-month period in 16 communities throughout BC, with each forum involving up to 100 participants drawn randomly from the registrants. Supplementing this, there were focus groups of up to 10 participants, with additional input gathered from aboriginal communities (n=4) and school students. In each of the 16 communities, there were additional workshops for health care professionals nominated by their associations and unions. The workshops focused on key solutions to issues in primary care, seniors, health human resources, and delivery models. Including all of the above, plus a website, mail input, and toll-free telephone line, there were over 12,000 submissions to the consultative process.
There was broad recognition that primary health care was central to improving prevention, demand management, and self-management and was the foundation of the system. There was advocacy for integrated teams providing patient-centred care plans, albeit with recognition that this would require changes to remuneration and incentives for physicians and a newsocietal attitude towards health and health care. The question of whether primary health care should be managed by regional health authorities was not answered conclusively, with respondents being both for and against.
One idea with support was the use of patient advocates and navigators, particularly for those with cultural and language barriers and elderly patients receiving care from multiple providers. This was coupled with advocacy for a patient ombudsman, more integrated care management and improved hospital discharge planning. In addition, there was a strong voice for self-care and reduced reliance on providers, recognizing problems with information asymmetry between patients and providers, and patient challenges around accessibility, financial barriers, and lack of incentives.
In examining overall system performance, there was an emergent perspective that Canada had considerable room for improvement and should study those countries purported to be doing better, with a view to greater innovation and evaluation of new opportunities. Not surprisingly, social health determinants and health equity were discussed, and BC was noted to have substantial and continuing inequity, both geographically and by sub-population groups. Equity seems to be better addressed for insured medical and hospital care than for services outside of these spheres, where ability to pay has apparent and deleterious effects. In terms of system-wide issues, strong voices advocated for the addition of a sixth principle: sustainability. Primary health care, with due attention to illness and injury prevention, demand management and self-management, was seen as strengthening sustainability.
There is no analytic work that links the findings from the submissions to the outputs of the process. As with any consultation, there is always the question as to which voices were heard and the weight and importance given to any points made. The concept of deliberative polling has been widely used in health system reform and renewal, yet how an issue or proposition is framed has substantial impact on what comes out of the process. The more the conversation is scripted with leading questions, the greater the risk of promoting and prompting certain ideas and directions, albeit no scripting may result in a directionless free-for-all and no measurable consensus. Of course, a sampling methodology for participants was not used in the process, lacking which one risks hearing only from those with strong views or vested interests.
There was no support for private for-profit delivery or financing of health care for medically necessary services and there was recognition that improved system performance would require improved leadership, decision-making, and management at all levels. The authors suggested an increase in the scope of Medicare to include pharmaceuticals and dentistry and called for improvements in health technology assessment, health promotion and disease prevention, and palliative care.
Any health reform and renewal process would be remiss in not including public consultation, whether it is a case of really doing something of value or simply being seen to be doing something. In the end, the cost of the process was $10 million. Only the future will reveal if this was money well spent.”