I breathe a sigh of relief as the announcement system comes on after an 8-minute clinical encounter: “please begin patient feedback.”
I especially enjoy this part of our weekly clinical skills session, and not only because it heralds the end of an encounter wherein I, as a medical student, nervously attempt to recall the many questions relevant to a clinical scenario. These feedback sessions, even though coming from standardized patients who are trained actors, help me appreciate the patient perspective. Of course, every health care provider has been a patient at some point (and will be again), but as we further our training, we become progressively more immersed in the language and culture of medicine. So it is valuable to be reminded by a patient when I inadvertently use jargon that is hard to understand, or to be alerted where I could have explained the risks of a procedure more succinctly.
Of course, much like the diversity of opinions in real life, the actors who work as standardized patients provide divergent and sometimes conflicting feedback. While confusing at times, this too is useful, because we need to know how to react when an approach that works with one individual isn’t well-received by another.
Today, patient voices play an increasingly significant role in steering the course of our health care, from education to policy. Let me give a few examples: the Meeting of Experts program at the University of British Columbia actively involves patients and community members in the health care trainees’ learning, while at Kingston General Hospital, the Patient and Family Advisory Council and Patient Experience Advisors have been recognized for their instrumental role in hospital decision-making processes. On medical innovation, both the Strategy for Patient-Oriented Research as well as the Patient-Centred Outcomes and Research Institute reflect recent commitment to patient-oriented goals, while in the realm of pharmaceutical policy, the Ontario Public Drug Programs has two patient representatives on its Committee to Evaluate Drugs and accepts submissions from specific patient advocacy groups.
But is “the patient perspective” in our policy deliberations representative of the patient population as a whole? Do they capture the diversity of opinions that I experience in my clinical encounters? Perhaps there is an uncomfortable truth that we are living under the illusion of a unifying “patient voice”, and that this voice has been primarily skewed towards groups who are highly organized, deeply funded and rigorously promoted. A valid question, then, is whether these groups do in fact represent interests of an average user of our health care system, whose individual experiences may not necessarily make their way to the policy roundtables.
Let’s take groups with positions on drug approval as an example. Drawing on series of market withdrawals of new drugs, two internationally recognized citizen groups Prescrire and Public Citizen actively promote increased pharmacovigilance and caution against approval of novel agents without adequate safety data. On the other hand, the Abigail Alliance based in the United States has taken the opposite stance, seeking legal amendments to provide Phase 1 investigational drugs to patients outside the context of clinical trials. While the position of this latter group may seem radical, its not that different from the uproar in 2008 from patient groups for access to the Zamboni procedure as a treatment of multiple sclerosis, despite uncertainty in the medical community of its efficacy. It is sometimes felt by patient groups in areas where therapeutic development has been lagging, for example, in Alzheimer’s Disease that drug coverage approval ought to be made despite ongoing debate of whether the therapy provides any meaningful benefit to the patient. All in all, it would be simplistic to attempt to reconcile the myriad of opinions from these groups into a single “patient perspective”.
Many patient groups also receive significant funding from the pharmaceutical industry: Glaxo Smith Kline lists its support for 58 patient groups in Canada in 2012, while Pfizer Canada provides funding to over 1000 non-profit organizations each year, many of which patient organizations. In general, 30-60% of patient groups report funding from drug companies. Sponsorship of these associations by pharma seems benign, but it alters the public perception of “the patient voice” in two ways: first, such funding has the potential to impact a patient association’s stance of neutrality; more importantly, however, is the issue of equity: given that some patient groups report reliance on donor funding to be insufficient for their operations, it creates an uneven playing field whereby patient groups who refuse pharma funding (or whose goals do not align with those of industry donors) struggle to compete with recipients of industry support. Drug manufacturers, in effect, become a potential source of unfair subsidy for the work of patient groups, which are mostly perceived as providers of unbiased “patient perspective” by the public.
Research in recent years has shown that health care delivery is skewed: bulk of the health care resources is consumed by the very few. Heavy users of health care are also most likely susceptible to the Triple Fail: low-value care that is harmful, costly and results in poor patient satisfaction. But their perspectives, in my mind, have not yet been fully integrated into our decision-making processes. Why? Because the heaviest users of the health care system whose opinions we desperately need are precisely the patients who are too ill or unable to invest the time to sit on a council or travel to a meeting in downtown Toronto.
We have made significant strides in seeking patient input in health care. But patient involvement does not mean selecting a convenient sample of opinions. We need better ways to ensure that patients in the driver’s seat of health care decision-making are represented by their level of encounter in the health care system, free from special interests. We often see patients featured at a bus stop or in the newspaper; but sometimes we forget those who do not have the organization or resources to lend their voices to the forefront of our policy discourse. Let’s remember that patient-centred care is supposed to be equalizing. It’s a call for providers and policy makers alike to lend our ears to the voices in the shadows. More importantly, let’s remember that change in health care, like any change, only moves forward when we entertain the diversity of opinions and not become rooted in the appeal of a single narrative.
The comments section is closed.
I’d like to thank you for the efforts you have put in penning this site.
I’m hoping to check out the same high-grade content by you in the future as well.
In truth, your creative writing abilities has
motivated me to get my own blog now ;)
roma drakt med trykk
There’s nothing more frustrating than having health-care professionals tell you a decision is based on patient-centred care when they’ve never asked patients at all. In health care, we often say that best practices won’t work here because “we’re different.” But so are patients. There is no one size fits all. Sometimes we have to have conversations, learn and be willing to change and adapt as we go, taking the best and leaving the rest.
Its ironic – we continue to talk about the patient perspective, when truthfully the patient perspective is all that should matter. I work in healthcare, but am not a physician. I am however, at times a patient and although the prescription may call for x, y & z which may have worked with most, I may still be an exception. It is my perspective as a patient that should drive what is done to me, although I recognize the knowledge for which resides with those that care for me.
In the days where hospitals were not common place, the question of who is the care provider in healthcare would have been a more appropriate question. Care is provided by a whole slew of people, and “to care” or “to provide care” should mean the same thing – once again, the patient perspective comes to pass.
We have done some brilliant work in incorporating what I believe is the first voice, but also those of the carer network around a patient, be that their friends, their family and/or who they identify as their carer within the health care decision making process as far as their individual encounters with healthcare are concerned. We have taken it 1 step forward though and said, we need those that have experienced us, the system, to join us in our operational, leadership & quality frameworks to allow us to see the forest from the trees and not be blinded by what we have been tasked with, rather be open to what we need to be focused with. This powerful voice (outside of non-profit groups in the community) is immersed in the decision making of how we run our healthcare system. It is small, but it is taking feet. It needs to be sustainable, and it needs support, but the hope is to keep it going.
I am not a physician and so I cannot imagine the burden placed on them and/or the clinicians that work with the patients either. It is at times a thankless, quite tiresome & grueling job. I am thankful for such professionals that take care of me. In return, don’t provide care, just care…
Patients and patient organizations will never fit in a nice, tidy square box that everyone seems to want to put us in. I have lived with Rheumatoid Arthritis for thirty years. There is no question in my mind that I know more about this disease than most primary care physicians and even some Rheumatologists. I am a pro-active, educated patient who can teach healthcare professionals more about my condition than any textbook or “pretend” patient. Decision makers want it both ways; they want us organized and engaged but when we educate ourselves they say we are not typical patients. As for organized patient organizations accepting pharmaceutical funding, we are not alone, others receive industry funding for their work as well. They declare their funding sources and move on.
Hi Linda,
Interesting thoughts and feedback – thank you! I agree with you that patient voices don’t fit into a uniform voice or a single narrative, and that it is vital to appreciate the diversity of opinions and perspectives. I also have much respect for organized patient groups that are knowledgeable and educated on the conditions affecting them and advocate for interests of patients. The challenge, though, is how we can integrate the “voices in the shadows” – how do we hear from patients who are unable to mobilize and organize because of medical, socioeconomic or geographic limitations barriers, whose views are nonetheless crucial? Personally, I think this presents difficulty for policy-makers as it is not as easy as going to an established group to seek their opinion, and will require us to think of new ways to incorporate patient voices into patient-centred care.
On the topic of pharma funding, in times of difficult economic times where private philanthropy is challenging, groups whose interests may not align with those of the industry and who are unable to receive funding will find it increasingly difficult to operate, and I wonder if it is a fair way of creating a community of patient voices. I echo Karin Briggs’ comment above: using the example of hemochromatosis, the long-term treatment for which is therapeutic phlebotomy (blood-letting), she asks, “[i]n spite of increasingly active support and advocacy groups around the globe, hemochromatosis tends still to be an under-recognised condition, by both health professionals and the general public. These groups may well ask – would this be any different if iron overload was treated by pharmaceuticals?”
I welcome your thoughts and look forward to continuing the discussion!
You will b a great doctor..intelligent and concerned with all the details..jim does have a point..these days there is so much computing in the care areas..bedside charting, for meds administration, etc, that i think the patient feels invisible at times..it IS so important that we remember they are an individual.and they need direct attention other than required medical care..it doesnt take much to acknowledge them & ask how they are feeling..that shows true care & compassion for a pt which can aide in recovery..this should be done in addition to standardized care..a pt is more apt to open up to u and share things which bring greater insight to their condition & hence, resolutions..we as medical providers are so busy at times we dont take the two minutes it takes to establish a rapport w our patients..yet its so fundamental in their care..
Dear All,
Gone are the days wherein, the doctors used to spend first 5 minutes of their visit time in inquiring patients’ welfare, his family members’ health, his place etc etc and then slowly they used to shift to patient’s condition and plan of treatment.
Now a days, patients are remembered not by their names, but by the investigations that are ordered on them and probable diagnosis as an outcome of these sophisticated lab diagnostic equipment!
Doctors won’t have enough time to spend with the patient as they are running from one hospital to another in search of patients.
I was shocked to see the fat bills that are made, when the discharge takes place. One has to buy health from these “Pay for Services” hospitals. Healthcare is no more affordable. It is rich man’s commodity. God bless the poor with only good health so that they stay away from the hospitals.
I believe communication is the key & that the health care team is a step in the right direction. However often the patient isn’t considered a member of the team & is often talked about rather then being spoken to. A patient is often dealing with trauma & more often them not in a vulnerable position making it nearly impossible to advocate for themselves until after they have started to recover & left hospital setting.
Then even if they make efforts to alert the individual staff or the governing structure they are not entitled to information on how those issues were addressed & resolved.
Through my many patient experiences I have learned that I can talk about what’s going on, my injuries, medications & history BUT I can’t make a person actively listen. Nor can I convince a team member (doctor, nurse, physiotherapist , etc) that despite my ‘lack’ of medical training I know my body better then they ever could.
When a doctor speaks to you, you are expected to listen, so where is reciprocity?
The sad thing is the lack on open communication both positive & negative likely creates the kind of patients staff dread most. Communication – both talking & listening need to be a part of the relationship at every level.
Elaine and Chris Isaacs, I think you have identified the core of many of the challenges very well. I’d like to think that providing patient-centred care is not about the ability of the patients to demand what care they want but to be able to be listened to, treated with compassion and to make choices within transparent, ethically-developed restrictions.
I agree with you. In health care tofay we look at legalities, techniques and tasks instead of truly hearing what our patients have to say. Policies need to include the voice of the patient.
This is a great article and very well written. However, whilst I totally agree with the concept of care being person centered the unfortunate reality is care will only ever be given within financial restraints – there isn’t enough money to give care in the way patients want it – quickly, efficiently, with empathy, personalised etc etc.
Care will always be driven by number crunchers who are far removed from the front line. All those providing care now how it should be given, but few if any are allowed to!!
I agree with you, Chris, that there are constraints within the system that can make providing patient-centred care difficult, but I also think that it doesn’t mean that we can’t do better.
A recent thoughtful article in the Journal of the American Medical Association titled “Patient’s Sister, Seeking Job” written by the sister of a patient outlined 6 small steps that physicians can take to provide more compassionate care – for example, practising volume control, introducing ourselves, recognizing that patients want to do normal, everyday things – these may not take much more time to do, but I think these small steps matter. I think that if we can learn from each patient we have the opportunity of caring for about what worked well, what we can do better and what other providers have done that they felt were effective, perhaps we can do a much better job of providing patient-centred care. What do you think?
A very thoughtful piece, and so true, what is genuine patient engagement, rather than tokenism. How do we deal with the fact that often the patient voices we hear are from more privileged and affluent people. For example, while I commend Angelina Jolley’s courage this week in sharing her experience of mastectomy as a preventive measure, it left me wondering will we hear the story of the woman who can’t afford the testing, and even if she could breast reconstruction is not possible because she cannot afford it, cannot take time off work etc.
It is how we ensure we capture as many voices as possible that will be the challenge, and then how we make sense of them. Thank you Xan Yu
Yan makes an excellent point. It’s so important to stop and think about how many different directions physicians and healthcare systems get pulled in all under the auspices of patient centered care. My concern is that the EHR explosion and requirements have destroyed the sanctity of the doctor patient relationship. I think documentation requirements have superseded the importance of communication
between a patient and their physician. In my opinion not very patient centric.
As a critical care nurse of over 35 yrs, I sadly see many patient’s wishes re: the care that affects their quality of life sidelined by the desires of doctors and family members. In all of my years I have never seen such unrealistic expectations by laypeople. I have patients literally begging their family members to let them go and doctors refusing to comply with the patient’s wishes because they are afraid of being sued by remaining family. What use is a living will, advance directive if no one is willing to honor the patient’s wishes? This is probably the biggest frustration we see in critical care right now. Healthcare has become so defensive. What ever happened to just doing the best you can with professional courtesy?
Hello Yan
Loved your piece ‘Who is the patient in “patient-centred” care?’. If only more health professionals, both young and old, gave these issues more consideration.
The issues you describe are surely common across the developed nations, with some patient groups finding donor funding to be insufficient for their operations, and therefore struggling to be seen/heard amongst the myriad of other deserving patient groups.
Hemochromatosis, or inherited iron over-load, is one medical condition which does not require pharmacological management – usually the treatment is phlebotomy, which reduces iron stores back to normal levels. Therefore, big pharma is not usually seen as a potential donor for hemochromatosis patient support groups.
Hemochromatosis patients, and their support groups, are located in many countries around the world. It is currently Hemochromatosis Awareness Month in Canada. In spite of increasingly active support and advocacy groups around the globe, hemochromatosis tends still to be an under-recognised condition, by both health professionals and the general public. These groups may well ask – would this be any different if iron overload was treated by pharmaceuticals?
Your article raises not only issues around the effects of the pharmaceutical industries on health care practices, but also other important issues around the way in which patients may be un/able to contribute to improved health care. Good luck with your future career!
Thank you so much again for kindly sharing your thoughts, as well as the poor experiences some have had in your encounter within health care system; it’s given me a chance to reflect on what I can do to improve as a trainee and in my future clinical practice.
Having worked with numerous clinical teachers and mentors, I think it can be said that no health care provider wakes up in the morning wanting to provide care that leads to poor satisfaction. Each profession brings a specific set of expertise and skills, and collaboration between nurses, physicians, physiotherapists, occupational therapists and other allied professionals, in my view, is key to providing the best care to the patients we have the privilege of seeing each and every day.
So why do bad experiences happen? Maybe when providers are constantly “in the trenches” and faced with repeated human suffering, time constraints and system demands, perhaps we can unintentionally lose our way. I don’t intend to present this as an excuse, but as an opportunity where we can make things better. Maybe what we need is a kind reminder from a patient we see, or a colleague we work with, that gently guides us back on the way of putting patients first. To create this, we need to have an environment where there is humility from providers who are willing to listen, courage from patients/colleagues who are willing to speak up (as all of you have done), and a system that enables us to have this type of conversation that emphasizes learning without the fear of punishment or retribution.
The idea of thinking about patients as consumers of the health care is a great start, though I have always been a bit uneasy about the term “client”, in part because I believe that the therapeutic bond between a physician and a patient, encompassing human suffering, pain and sometimes loss, ought to describe something more than the relationship between real estate agents and their “clients”, or between grocers and their “customers”. As health care providers and patients. I think there is much that we can leverage as “partners in health” to make our care more accessible, personal and responsive to our needs and emotions.
Well written Yan. %featured%I agree completely. Dr. Peter Pronovost from Johns Hopkins, creator of the checklist to prevent central line infections, says it will take humility, courage and love for patients to change and improve the the provision of medical care.%featured%
By the way Yan, have you started your wait list for future patients? : )
Thank you, Barb, for sharing this quote! I think it’s spot-on.
(And thank you for your kind words! It’ll be a few more years before I finish my training – perhaps we’ll get to the point of delivering same-day appointments and not have to worry about wait lists by then! Definitely looking forward to the journey in the years ahead!)
Yan, you have written a very poignant article that is being well received. Many of the points you raise are cloaked around issues that stem from improper or lack of communication and much of this derives from past teachings learned from hierarchal sources during a professionals education. From the top down approach and top dog as viewed by the tradition of medicine calling the shots both for patients and their “respective” colleagues , both inside medicine and those outliers, called nurses and other health care professionals, the patient has never had a chance other than being paid lip service, until now.
Between the internet and people like us who have an opportunity to talk and spread the word, the full democratization of “patient centered care” inside medicine and its respective peers, is not likely to change until we change the model. In a book I am writing, THE PATIENT WILL NOW SEE YOU: How Listening To The Patient Will Redefine The Patient-Doctor Relationship, I propose many concepts for achieving patient-centered care and outcomes but in addition, I also propose a teaching and learning model that brings together all aspiring health care professionals, along with selected patients to be educated in a collaborative manner which means they learn, study and practice together, each sharing their knowledge and skills and learning from one another so the “system” of professionals is one of including patients so “NOTHING ABOUT THEM WITHOUT THEM is the focus. The model is a collaborative process and begins from day one. This may seem too complex but it isn’t. The only complexity if you will is the self-interest each group has in protecting “their own” from having to socialize in the classroom and learn from one another.
Elizabeth Rankin BScN
Elizabeth,
If you were a student nurse at Kings College Hospital, London until 1965 before sailing to Wellington, NZ to take up a nursing post, we wrote to each other for about six months. Would you like to reconnect and catch up after all this time?
Best regards,
Thank you! I love that you are learning to listen to the patient in your studies. I agree that it is important to be mindful of the source of funding of or motive behind any patient group.
I have found that some areas of health care are so void of patient input that having any patient voice is better than none- especially if it triggers the conscience of certain practitioners or policy-makers that their work actually relates to or has an effect on real people. The areas that are void of patient input or even recognition of the patient as a person seem to be those in which limited resources are of greatest concern. Perhaps it is no surprise that these are the areas where there is the greatest clinician burnout rate.
Thank you for pointing out some great examples of inclusion of patients. I would add Patients for Patient Safety Canada, a patient-led group supported by the Canadian Patient Safety Institute is another great example of patients sharing stories and being actively involved in many areas with a purpose to improve health care in a collaborative manner.
One of the most valuable things that my nurse educator told me was “listen to the patient long enough and they will tell you their diagnosis”. What a nice insight by a medical student. Don’t lose it as you move on in your career.
David, that sounds like the famous Sir William Osler quote, “Listen to your patient, he is telling you the diagnosis”
http://www.oslersymposia.org/about-Sir-William-Osler.html
Osler’s values and extraordinary life lay many of the foundations that enabled much of the progress of the past century in medicine and health care. Many of the tools, economics, regulations and science of healthcare have changed in the past 100+ years but many of the lessons he taught are timeless.
One more thing: I do agree with some of the comments that state that some doctors today are very indifferent to their patient’s needs. Unfortunately some of them they view their profession as a big bussiness rather than a duty to serve those in need.
Great job Yan!
I think it is unfair for some groups to claim that they have the right to patient’s perspective, or that somehow others just don’t understand where they are coming from. We are not only citizens who care about policies or cost containment, we are THE PATIENTS!
Enjoyed your essay but the same could be said of Big Pharma funding medical research.
As someone who has required intensive medical follow up for over 13 years now, in my experience, patients are sometimes unable to get through to their doctors. They explain symptoms and appear not to be heard – over and over.
I have also seen in two recent visits to two different emergency rooms (I would rather die than go there!) in my first experience in an ER in over 30 years I was astounded by the complete lack of compassion shown to those who were visably suffering.
The nurses and doctors, when I asked if they could be treated first, laughed and said, never mind they aren’t in pain, they are regulars here!
This trend is very disturbing to me. Medical personnel dismissing such people should be held personally accountable for these patients’ suffering. It was horrendous and after my own very limited polling of about 100 people, not unheard of, in fact, is quite the norm across all of Ontario.
The OMAs “contest” for people to send their doctors a thank you note is looked at as a joke.
In the future more and more people will require more and more health care as the boomers become seniors and they will demand better treatment.
Practioners in general seems to be stuck in a rut and mostly appear to make decisions based on their personal opinions and run their offices very poorly so to keep their expenses down.
If the patient tells them they are in excruciating pain (or whatever) they need to be listened and attended to, not dismissed as is now the case.
And so they should.
simple rules for health care professionals-talk with patients not at them. It’s a conversation not a lecture. and much can be accomplished with therapeutic presence alone. So many things require healing not curing. Nurses have know this for centuries. Just check out Flo’s writings
Amen Lynn. Nurses are a godsend and the backbone of our health care. NOT doctors. The hospitals could run quite well without many doctors!
A hyper-zealous patient advocate recently shared this “patient perspective” with me:
• That there is no patient perspective in healthcare until such time as patients are valued equally with all other stakeholders.
• That there is no Patient Centred Care until Patients can take ownership of the system in the same way that health care professionals do.
• That standards of accountability and transparency be the same for professional associations and patient groups.
• That policy be directed by patients, not a remote echo on the steps of parliament
• That Patient Centred Care be defined by the patient at the centre of care not by lip service.
• That the Patient Experience is a “Patient’s Experience” not just the interaction in a hospital or with a single health care provider
• That patients be an integral part of educating health professionals, not just “standardized” or “mannequins” but authentic people, sharing experience in a deep, honest way.
• That until all stakeholders use real pictures depicting real situations in all websites, posters, brochures, fundraising letters, videos etc, we’ll never have an honest appreciation of the patient perspective. Stock photos of smiling patients, staff, physicians, technicians of all stripes, in neat, laundered uniforms, pristine hotel style accommodations, tantalizing meals, and happy families as though its all like a Disneyworld visit just doesn’t represent the patient perspective.
• What’s a patient perspective? Suffering. Pain. Tears. Anguish. Discomfort. Grief. Mourning. Sugar coating it is demeaning, offensive, and patronizing on many levels.
Patient perspectives have many voices – they all deserve to be heard. For instance, listen to 9 year old Sonia Hager describe hers http://patientcommando.com/stories/sonia/
Zal Press, Executive Director, Patient Commando
And, might I add, when insurance companies or other “payers” don’t get to dictate the care a patient requires, but that the caregivers have power in dictating this need and ability to over rule the payer! Or, that insurance companies are not allowed to have such exorbitant profits, as it proves they are not doing right by their customers ~ the patients and caregivers!! I mean, how many trillions does a company need to “make a living”?!!
Nothing about us without us! That is the mantra for patients in the know and known as “hyper-zealous” on patient perspectives.
All Good Points. Thanks for sharing this.
Elizabeth Rankin BScN
author: THE PATIENT WILL NOW SEE YOU: How Listening To The Patient Will Redefine the Patient-Doctor Relationship
Book to be published later this year.
Thank you for your comments and thoughts thus far! In discussions surrounding patient perspectives, I am constantly reminded of a particularly poignant section of an article in the BC Medical Journal 2 years ago: “We sometimes fail to realize that what we [as health professionals] consider routine is, to a patient, a unique and frightening time. Physicians must treat patients the way they or their loved ones would like and expect to be treated when they need care.”
Looking forward to our continued discussion!
%featured%Excellent, thoughtful opinion re why many patients without the the resources (time, social/intellectual ability, money or orgaizational support) often aren’t heard regarding their access to and quality of the care they receive. %featured% I am glad to hear that at least some effort is being made to train new providers to listen carefully to what each of their patients have to say and incorpoating patient input into treatment plans. I believe this is the key: reinforcing the patient/provider relationship at the point of care and being aware of but not relying soley on research funded by any special interest group which has a relatively narrow populaton represented within the findings. Each practice has unique patients and groups of patients that require individualized approaches to their care…and only by developing keen listening skills can providers truly provide patient-centered care for each of them. Patient advocate groups certainly have a place and do good work educating patients and providers about the issues at hand, even those funded by pharma or other 3rd parties with a significant financial interest in healthcare.
Also, a number of facilities have “laypersons” on their Board and some even include patients or other community laypersons on their Quality Review and/or Performance Improvement committees!
Perhaps the best way to begin is to recognize that there is no one view that patients have. Nor should anyone be attempting to assume authority over the “patient point of view.” But of course there is , also disagreement among doctors’ organizations, among nursing groups and among all other provider groups.
However%featured% it is important to point out that for a long time there was no patient perspective at all as part of the debates about healthcare. Everyone else represented the patient point of view. This led to a health care system that did wonderful things for us and to us, Now we would like a system that does things with us.%featured% We have begun to speak for ourselves through a growing number of patient organizations. And it is a richer environment for us to begin to be able to debate amongst ourselves about what patients think is best for us. This is a goof thing and should not be disparaged. Health Debates lead to better results.
As for drug company funding, that remains the purview of the particular organization. We at the Patients’ Association are patient led and patient governed and we do not as a matter of current policy accept drug company funding. policy. Nor do we accept large global grants from other organizations that might see to impact on our independence. We prefer to enter into discussions of drug policy without an invisible constraint of dependence.
Before I see you.. ask me how I am doing.. after I see you ask me how I am doing… Such a simple thought but still the exception rather than the rule. We do not always need standardized tools like SF 36 or EQ5D . Perhaps if we embedded the notion of patient as customer and simply asked about their symptoms, problems issues and then found a way to measure the impact we have had on them. Yes it not standardized or probably reliable but it is a start.
Absolutely, Jim. My mom has a dr she thinks is awesome and she told me that he thinks of how he’d like his mom or other family members to be treated by their caregivers when treating his patients! I think that could be helpful to all caregivers to remember.