Well, today’s the day. After many months of long, hard work by many talented professionals — among them, Sarah Greene, managing editor; co-editors Jessie Gruman and Charles Smith; and Alan Greene, deputy editor — the Journal of Participatory Medicine is now live!
What is the Journal of Participatory Medicine? And what the heck is “participatory medicine” and how does it relate to mental health?
The second question first. Participatory Medicine is a cooperative model of health care that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care. The ‘participatory’ concept may also be applied to fitness, nutrition, mental health, end-of-life care, and all issues broadly related to an individual’s health.
While we may think of this model most readily with medicine — patient in a bed with a life-threatening condition, doctor in white coat barking orders and what’s going to happen next — medicine must be considered most broadly defined in this context (indeed, many hours were spent on arguing whether “healthcare” shouldn’t have been substituted for medicine, to be more inclusive of all health professions). In this way, this model encompasses mental health care as well. Patients cannot be passive vessels waiting for “change” to just happen. It will not. It requires the patient’s active participation.
We actually see this no more clearly than in mental health care. Psychotherapy doesn’t work just based upon the expertise and skill of the therapist. The only patient in psychotherapy that gets better is one that actively is involved in their treatment, and participates in their own change. Yet another idea that psychology can teach to medicine.
The Journal of Participatory Medicine will therefore serve as a vehicle for communication of this concept. It seeks to explore the extent to which shared decision-making in health care, and deep patient engagement, affect outcomes. The Journal’s mission is to transform the culture of medicine to be more participatory. The Journal is an online-only, open-access journal — meaning it costs nothing to read its articles. If you’d like to engage in the discussion regarding an article, free registration at the site is required.
An empowered, informed patient will be the model of care for the future. Healthcare providers, such as physicians, nurses, pharmacists, surgeons and others, can either accept this partnership and embrace it, or they can reject it and try and to continue the old “doctor knows best” philosophy, one that is sorely outdated and no longer in step with the times.
The Journal is a project of the newly formed nonprofit Society for Participatory Medicine (of which I serve on the board and as Treasurer). The Journal receives no advertising or outside funding — it is funded solely by the Society. The Society is membership-supported, and you can learn more about membership here.
Please, take a moment to check out the Journal of Participatory Medicine, and let us know what you think!
22 comments
Kudos to you and your colleagues for getting this up and running, John! My first perusal leaves me very optimistic about the scope and purposes of this publication. –Best regards, Ron Pies MD
I am sorry, but this post is a disguised shameless promotion to me. And I am offended by your comment, “healthcare providers, …can either accept this partnership and embrace it, or they can reject it and try to continue the old ‘doctor knows best’ philosophy, one that is sorely outdated and no longer in step with the times.”
Yeah, the internet has made patients and other non-qualified people so much equal to providers! What a load of crap that just fuels that adage I repeat at this site over and over again: hear the lie enough and it becomes the truth! I don’t support paternalistic attitudes my predecessors forced on patients, but this swing of the pendulum that patients dictate the course of care now is one reason why health care flounders, and now we have politicians ready to step in and save the frickin’ day! Well, I see myself as one voice of opposition and reason to those who are hopefully somewhat still open minded and not seduced by the dark side of this medium. Hence why I am going to protest in D.C. in about 2 weeks.
I hope people see through the choir too.
Hey, you have some nice posts here. This one just seems to sullen it a bit. I’ll give you credit that at least you allow dissent to be stated. And I truly thank you for such opportunity.
Sincerely,
skillsnotpills, board cert MD
PS to you and Dr Pies: maybe not needed as a specific designation in DSM V, but internet addiction is a legitimate issue!
My first thoughts upon reading this article is, that ‘participation’ needs to mean that there are choices involved. And choices are not always something one choses.
i.e. I remember being diagnosed with a pretty severe illness that I knew absolutely nothing about. in fact, I didn’t even know enough about this diagnosis to even ask the right questions, never mind make choices or participate in decisions about my care.
I just wanted to be guided, and told, and trust. And so I did, and I was so grateful for not having to participate but follow. (and in this case I was even told how to participate and follow)
Another time my doctor urged me about seeing an endocrinologist, and I understood my limits well enough to say ‘No’, that I was not seeing an endocrinologist because I knew from experience that I could not follow his/her instructions, and that this would be negative for both myself and the doctor. (that I needed to protect both_
Great article I emailed it to my professor
i like the concept…is this a scholarly endeavor? like randomized trials and whatnot? or is it largely theoretical?
Annemarie Mol’s book “The Logic of Care: Health and the Problem of Patient Choice” makes Katrin’s point very well.
It is well worth a read and you can access most of it on google bookes here:
http://books.google.co.uk/books?id=QBuaNun81eAC&lpg=PP1&ots=vj0qsFTEUo&dq=annemarie%20mol%20logic%20of%20care&pg=PP1#v=onepage&q=&f=false
skills – Not sure what your point of your comment was, especially this point: “disguised shameless promotion to me.” What do you think every blog entry here is? I am *promoting* articles, ideas, other blog entries, whatever every single time I write something here! And what exactly is “disguised” about what I wrote about? It’s a new peer-reviewed journal that’s very up-front and transparent about its purpose.
You’re welcomed to disagree respectfully with something here, but please don’t resort to hyperbole to suggest a motivation that isn’t there.
You’re also welcomed to stick to your opinion about these things, but it won’t change people reading more, learning more, and asking to be a partner in their own care and treatment. And if a doctor refuses, well, there’s plenty more doctors to choose from…
Participatory medicine won’t be for everyone, but for those who want it, the journal will help promote the practices and information regarding it.
I don’t know about you, Dr Grohol, but if I am involved with a publication and feel it’s worth superceedes my involvement, I would note that I am involved up front and focus the readers that if I do not profit from it in any form, that disclaimer is out of the way and the readers will focus on the content. You are treasurer? You do note there is funding, albeit by readers of the journal, so are we the readers to assume the fees are solely for operational expenses? And there is a board? Sounds like there could be a profit agenda of some type, probably small, but in this day of covert agendas of profit first, care likely second, I think readers deserve to know that this is a publication that is care driven first and foremost.
So, if that is the case, my comment is not applicable. I think this explains why I said earlier about disguised promotion. I will apologize for using the word shameless, as I will hope that is not the case. But, let’s be honest, sir, that you have been called to explain some past posts that do not have a pure health care only agenda. Deeds not words are what I live by and ask of others to promote as well.
And, your comment could be taken as offensive that doctors who are directive are out of touch with the times. As far as I am concerned, when physicians made the stupid mistake to allow patients to be called clients, or I have even heard people demand to be called customers, medical care is not a business, sir! I went to medical school and operate under the model of physician-patient interaction. The term client has dumbed down the medical profession, so if psychologists and social workers want to treat clients, that is those professions’ call, don’t drag doctors into that quagmire that a business model has made of health care. If you can direct me how to get a hard copy of your publication to review, I would appreciate this.
Lastly, if I thought your site in general was inappropriate, I would not be commenting here. And, I did end my prior comment by stating you do have some nice posts here, so I am not always negative. In general, thanks for the reply above.
Sincerely,
skillsnotpills
Oh dear – with these comments it sounds as though a little envy is creeping in!
I am based in the UK and I have to say that it is refreshing to read about mental health in a well presented down to earth way. I used to be a psychiatric nurse in the NHS and we are so backward at coming forward in mental health, I feel that we don’t put enough money into it and we are still using drugs as a chemical cosh- drugs that have been around for years and are past their theraputic sell- by- date! So instead of criticising this blog – promote it! I feel it will provide a platform for others to help themselves or if their issues are more of a severe nature, seek and get the help that they truly derserve.
Another thought is, that it is not enough for a patient to merely think, and care about what his/her doctor should do for her/him.
It is equally important for the patient to think about what he/she can do for her doctor in order to receive better care.
The best way of knowing what and how your doctor thinks (about you as well) is to read your charts. But there are other ways you can help and make yourself likable as well.
“…equally important for the patient to think about what he/she can do for her doctor…”
What does that mean, Katrin? You are not doing anything for me as a doctor, it is what you are doing for yourself to better your medical issues, hopefully taking a lead or pursuing an alternative intervention that will have a positive impact. Unless you have an explanation that I am not foreseeing, I can only interpret this as yet another example of what prompted me to comment here in the first place, that patients now think they are on the same level as the provider for input and pursuits. If you, as in the general readers here, really think you are clients and customers and think your input has to take precedence to what the doctor is trying to define and treat, I suggest you all go to the ACME School of Medicine and get your faux MD degrees so you can then treat yourselves.
The more I read the internet, it only sickens me how medicine has become so simplified and lowered as a profession of true skill and training so any simpleton can stroll in and tell me what their diagnosis is and what I have to provide so they can go on their way.
Let’s just make all non-controlled substance prescriptions over the counter products so all the idiots can get what they wish for. Can’t wait to read the hard copy of this journal to see for myself how legitimate the intention is. I’ll have to go to the internet link to get it?
Gee, the easier it is to get information, the more reliable the info is? How many times are we touching the stove to realize once and for all it is hot to work!?
Have a nice weekend.
I just went to the link and to what I can conclude from perusing it, just available as an internet mdeium? Is there a paper version one can subscribe to? I can’t read long articles on a screen, so I am willing to pay for paper if available, so please advise if an option.
Sincerely,
skillsnotpills, MD
skills says: ‘What does that mean, Katrin? You are not doing anything for me as a doctor..’
I mean skills, that I try to be a partner in my care with my doctors, and try and put myself in their position, for the purpose of receiving better care. But not only that, but because I do care about my relationships with my doctors, and they are human beings, I am sure of that.
When a doctor likes you, you will receive better care, and there are things you can do.
Your doctor is also so incredibly busy that you cannot expect him to remember everything or even you, so it’s a good idea to help have them remember who you are, and in a good way. Like, that you appreciate them.
i.e… a few examples
1) I accidentally picked up some of my doctor’s patient notes, things she jotted down while examining them.
I immediately sent these back to her and also alerted the office that this letter was important for my doctor to open. On a little note, I thanked her for all the time she took with me two days earlier.
2) When asked to review my medication sheets, I noted something written behind a narcotic painkiller I take on a prn basis. (as needed) It said that patient must wait 28 days between refills, and that immediately alerted me to the fact that my doctor was worried, or suspicious about my overusing these drugs.
I will leave out what led up to this, but a few days ago I confronted my pharmacist and I told him I did not appreciate them skipping refills on this drug. It may not matter to them but it sure did matter to me as my doctor now believed that I was taking a lot more of those painkillers than I was actually taking.
To make a long story short, the pharmacist immediately examined all the data and when I came back 15 minutes later, he handed me a copy of a letter he had just faxed to my doctor. It stated that he was very sorry, and that their computer had a glitch that sometimes ‘swallowed’ refills and that this had happened to me at least twice, that I never requested my medications early.
(I hope I don’t have to explain how my actions here impacted my relationship with my doctor)
I could list a hundred of examples like this.
It’s always the small things that matter the most.
And, I have recommended this book before, it is great:
‘How Doctors Think’ by Jerome Groopman
Had a minute to peruse the net and read your reply, Katrin, so I note the following:
1. Read Groopman’s book, he gave a disclaimer that his reporting was not in league with what a psychiatrist might experience and respond to with patients, and while he is right with most of the commentary, it also points out to me that patients need to realize that exceptions can be just that, exceptions. So thinking you are experiencing an unusual illness, or that a doctor has to review a 3 inch thick prior record is a bit off the mark for 80% of patients. Also, while I read the book over a year ago, the role of psychosomatics to some of the presentations should be in consideration; sometimes it was, sometimes maybe missed. Mind and body go hand in hand, and yet so many physicians and patients want to dismiss this link.
2. I am not going to debate the use of pain meds here, because I will be frank that until proven otherwise, a physician has and should use the right to be suspicious and wary. And, you can’t refill controlled 2 substance prescriptions, so I don’t quite understand your example here. Lastly, for the general readers who might not know this, prescription medication misuse/abuse is the fastest growing section of substance abuse/dependency in the US these past 5 or so years, and I know that first hand seeing so MANY people come into my office manipulating for benzodiazepines like Xanax, Valium, and Klonopin. So, I don’t get your point, Katrin, with your prescription issue as an example to “do for your doctor”. And, you see how the internet can blur the clarity of an issue like this just typing in words to a person you don’t see and get non verbal cues to clarify what you hear, or in this case read. Thus why I am suspicious this medium gets too much validation as a source for legitimate information and alleged facts.
But, thanks for replying, and now I am going and having what I hope will be a nice evening outside this silicon existence too many seem to be traveling these days.
Bon appetit, and bon soir!
One last thing, at least hopefully. This time my doctor pretty heavily insisted I see a gastroenterologist for a second opinion and/or.
I absolutely dreaded this appointment and as soon as the nurse, and then later, the doctor came in, the first thin I said is that I did not want to be there, and that I did not think I had any problems at all with my liver, and that I did not want to have a MRI. Further, I felt awfully sorry for my insurance company, who would be paying for this visit and an expensive test I did not need, and why I did not need it.
The doctor finally interrupted me and said: “Hold off for a moment! let’s talk about this.”
he spent one full hour with me and he showed me how to read CT scans and MRI’s and he pulled up my earlier films and guided me through my insides, and explained – it was fascinating and this was the greatest specialist I had ever known.
In the end, he agreed with me a 100%, and told me the decisions were now in his hands, and he would write a letter to the referring doctor and explain that the MRI was not needed but that we, (he and I) decided to do a CT scan some 6 months later and if that showed no further changes, we could stop watching. Also, that I had promised him to call immediately if I had symptoms of nausea, weight loss, etc. he also mentioned that I was an RN and had a very good understanding of the process.
He sent a three page evaluation report to the referring doctor, to my PCP, and to me as well, and I did not even ask for it.
I don’t know Katrin I think I am with skills on this one. When I go to the doctor I don’t think about what I can do to get him or her to like me. If I have a specific issue that needs to be resolved I go, make sure he isn’t a quack and hopefully get my problem solved. I put my trust in my MD to help me feel better. They are the ones getting paid to do their JOB, it shouldn’t be my job to take care of them and their feelings. Of course that doesn’t mean I have the right to be disrespectful or rude…that isn’t the case at all. I would rather see a heart surgeon that is a complete jerk, but the best in his field than a sweet fuzzy heart surgeon that was completely inept.
Oh and I would never see a doctor that referred to me as a client or customer..sorry but not going to happen.
PS…Katrin as far as the narcotic pain killers go or any medicine for that matter that might just be an issue with insurance (if you have medical insurance). My insurance only allows a one month supply for narcotics and I can only get a refill every 30 days on some…just a thought.
Erin, I wouldn’t find it acceptable to be called client or customer, either.
I think it is different in my case, because I have so many chronic illnesses or problems, so it’s hardly ever about a one time ear infection, or sore throat, and even when it is that is not really my relationship with my PCP.
She manages all and everything with all other doctors involved and all specialists, and it’s really a tremendous job for her.
Only she prescribes and when someone else does it goes into the system or I let her know.
About those narcotics, I have a pain contract with her and that I agreed to and we both signed. i agreed not to get narcotics from any other doctor, and if I do, I have to report this immediately.
Yes, it is about narcotics in this case, and if I know one thing it is that doctors hate drug abusers and there are plenty of them who play a lot of games and are really manipulative.
Skills, you are right about about misunderstandings and communication over the Internet.
Every state is different, and in Oregon, where I live, you can put 5 refills on controlled substances like vicodin, but not percocet, they have to be hand written every time.
I didn’t do anything for my doctor. What I did was that I got a negative clue, and then realized that the pharmacy was messing up, and then straightened out the problem so she would no harbor this belief that I was abusing drugs.
I of course suspected someone in the pharmacy to be addicted, and that may even still be the case, but it’s no longer my problem.
Thanks all you guys for responding. Katrin
A very good article. Do you have a good team, good concept.
good article..good people…good work!!!
Thank you for sharing experience
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