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The Patient - Physician Relationship - Transcript of Andrew Robinson's remarks at the Foundation for American Health Care Leadership Conference, December 8, 2004.

Andrew Robinson: I was a trial attorney for many years. And the one thing you never wanted to do as a trial attorney was to sum up after lunch. You would do anything. You would hold a witness for hours, you would come in lame. And somehow my karma is I'm speaking after lunch again.

I've got a number of different areas that I would like to touch on. The Patient/Physician relationship isn't an area that I talk about much anymore. I am more of an information tools wannabe. So I've tried to put things together and reflect what's been discussed. My remarks may be a little disjointed but I think they will better reflect where we are now.

I'll tell you a quick story. A patient goes into his physician and the physician has been running a number of tests, and says, "Look I've got very bad news, you've got less than six months to live."

The patient is devastated and says, "How can this be, I've got a family, I've got my life, my work. In six months I couldn't even pay your medical bills!"

The doctor thinks about this for a moment and says, "All right I'll give you another six months!"

I have one prejudice as a patient which will be reflected in this discussion concerning physicians. It's not what you think - Physicians are my heroes. I would not be here. More importantly I wouldn't be going home to my family if not for the unbelievable work, dedication and perseverance of doctors. As far as I am concerned you can't pay doctors enough. You can't do enough for them. What doctors do is incredible, and unfortunately the way the health care system has been developing, doctors have become kind of the "point of fault."

And when I do talk about some of the shortcomings of doctors it's only in light of gratitude.

I'm talking about the physician-consumer relationship; except it's supposed to be the physician-patient relationship. And it raises a question: When did I become a consumer? I don't consider myself a consumer. What I go through doesn't have to do with being a consumer. And why is that important? Because we now have this consumer overview. Which is important and it's valid because there are economic issues, but you need to be very careful when you start using the wrong lens to look at people. And it's very easy to call people consumers. It's a box, it's simple, it's glib, but it's also very unemotional - it doesn't take in the real struggle and drama that people go through. So when you go back to your organizations, when you're looking at things, be very careful about making that distinction.

One of the difficulties is, in this level of audience, we have to look at the large view of what's going on. It has to be theoretical - it has to be large groups, but you tend then to start losing the focus on the individual. And everything we are talking about is 'what helps patients', both for the real value for their lives and the lives of their families, and I would say secondarily, although it becomes more of a concern, the economics.

Another difficulty I've experiences and we have been discussing is that we want physicians to listen to patients. It's important for physicians to listen to patients and we get very upset when we see that they are not listening to us. But you have to look in the mirror at your own organization, group, corporation. Are you listening to patients? Are there patients on your advisory board? Where do patients fit into your planning - your strategic planning. You need to start bringing the input of patients into your decision making process.

I've been to conferences where I've stood up as a patient and people have looked at me like - "Oh, a patient. What's he doing here?" And unfortunately it's really been like that.

There are a lot of smart patients now. Patients can give you the feedback and things you need to know, so you want to try to bring us in. It's like having a civil rights meeting without any minorities there. And we have to start realizing it really has that kind of import.

We are talking about physician-patient shared decision making. Again, what is the idea of shared decision making? When you go to buy a car, you don't go to the salesman, and the salesman says, "Great, I'm glad you came, we're going to share this decision making process of you buying a car."

You would say, "You're nuts. I'm deciding what car I'm buying and you're giving me information."

And from my perspective as an engaged patient, I'm not sharing this decision with anyone. I'm the one in the hospital room at three o'clock in the morning in pain, lonely, frightened when the doctor is gone, the nurses are not around, my family is asleep...its just me. I am the one that is ultimately responsible.

An important thing to understand is, even if the patient's making the decision doesn't affect the outcome, it is everything for the patient to feel that they are the one that is guiding their own destiny. That they're making decisions, that they're empowered because whatever the outcome; good or bad or somewhere in between it makes all the difference to the person how they are going through this. So it's very important that the patients have that sense of decision making.

The dynamic has changed. It used to be the physician said this and the patient did that. But now patients have so much more information. We have the Internet, we have all of the resources, and information equals knowledge - equals power. I can go in and have more information on certain things than my doctor does because I have more time, I have more access, and I can talk to other patients about the real world viability of what's happening. So that's how the balance has started to change.

The other factor is that often times the physician can't be certain what the best course of treatment is. We look for evidence-based medicine. But the medicine is always changing. Look at breast cancer. A physician can't say for breast cancer - what is the best procedure. It's not clear. So it's as much the patient's decision as the physician's. Neither one has a superior basis for decision making. I need the physician to be able to tell me what the different probabilities are, what their experience is, but ultimately they don't know the answer any more than I do.

As far as shared decision making; there was a study, a major HMO study done about four or five years ago, about what qualities patients most valued in physicians. So think about that for a moment. What do you think the top level things are going to be? Ninety-eight percent - Compassion. Ninety-six percent - Partnership. Questions of quality or competence weren't even on the screen. People assume that.

So when we're talking about shared decision making, what we're really talking about is feeling that there is a relationship with the physician. I'm putting my life in your hands. I don't know what the right thing is. All I know is that I am facing cancer or a diagnosis that is going to affect my ability to do things for the rest of my life. I want some relationship with you. I want to feel that you see me as a person - and that is the basis of your consideration.

False Hope and False Despair: There is a sense I get in the physician community that you don't want to give patients false hope. I would say the real problem is false despair.

From my own experience, I was, ten years ago, out west on a camping trip and went in for a blood test because I was a little sick. Doctor came back, introduced himself as an oncologist, told me that I had a terminal and incurable form of leukemia and less than five years to live. And that was the conversation. He said you don't have to hurry back to New York because they can't do anything for you.

Okay, what he said was the "truth". What he could have said was, "You have a very rare disease for someone your age. The statistics that we have are for people over seventy years of age. We don't know how long you might be able to live but we have a lot of new chemotherapies and medications which can extend your life for a very long time and during that time we might find a cure." Which is in fact what happened. They started doing bone marrow transplants for people my age with this disease Same information - same truth, presented differently.

Not only does it have an incredible personal impact, because nothing will make you tailspin more than getting hit with that kind of news. But if you keep getting hammered with it enough times, and I have seen it with many patients, the whole mind set - compliance and everything else, you just start going down. You just go into this cycle of depression, despair, frustration and it's very hard to get patients to do anything to break out of that cycle when it's reinforced by their doctor.

So, how do we reshaped the doctor/patient relationship? I think you have to differentiate between new doctors and old doctors.

New doctors need training on how to talk to patients. I see it more and more, the new doctors are coming in - they're kind of cute, they're kind of funny they ask "So - how are you feeling?" But they are making efforts to relate on that level. I think what we need to accomplish is at the medical school level. All of the medical schools have training programs, but my sense is, it's kind of a throw away. "Yes, we have a training program..." We need to encourage the best training programs, the best practices. Either through journals, publications, organizations, through government grants - so we get the best training possible for all up and coming medical students.

The question is, with the older doctors - however you define old - that's always kind of a moving number - how do we change that dynamic? And I think it's behavior modification. What have we been talking about here? It's ego and money.

Here's my suggestion, something - where my company, Patient2Patient started years ago and maybe we were a little ahead of the track - have a patient rating system. Some health care organizations are already doing it for different physician qualities. Let the patients fill out a form that lists - did the doctor do this, did he talk to you, did you feel that you were informed... Get enough responses and put it into a database. For ego reasons doctors don't want to see that they are on the bottom. In addition put in monetary incentives just like you do for other quality initiatives.

If anyone wants to talk about that, we've done a lot of work on that. I would be happy to speak with anyone in that capacity, health care organization, corporation - it's not an expensive tool to put into place.

The biggest problem that we have been talking about is time. I am going to suggest a much different approach, because if you have doctors with eleven minutes for an office visit - okay, it's not going to happen. You are not going to have an effective and meaningful patient/physician dialogue. It just can't happen. I mean, you take any one of the patient situations we just saw and that is not an eight minute conversation.

I would rather spend twenty minutes with a clinical nurse really talking about what's going on than eight minutes with a "drive-by doctor." A "drive-by doctor" is a doctor that is walking out of the room as soon as he gets in the room. My wife and I have a technique when we are meeting with a new doctor. She goes and stands by the door. And finally they figure out that they are not getting out of there until we get the answers. If it's a continuing problem then I am not going to see that doctor again.

Any of the demonstration patient videos we just saw are not a discussion for a doctor. It's not their training, it's not their background. We need to bring in more nurses - health care people, intermediaries and the doctor needs to come in on the top tier to help resolve the medical aspects of those problems. To come in where the doctor needs to come in and talk about the advanced treatments, medicines and things like that. The patients need to be trained as well so they come in knowledgeably, but I think the whole system has to change and the patient/physician relationship needs to broaden to include other health care providers.

In Africa where they don't have enough doctors they are using trained health care assistants to go through and do a lot of the diagnosis. And the clinical studies have shown they are doing just as good as the doctors. They have clinical assistants doing Cesarean Sections. They're doing better than the doctors because the people that are doing it have better hand skills.

That's not going to happen here, but there is certainly a long way that we can go to taking the doctor out of where he/she shouldn't be and having a different interface with health care professionals - specialists in the needs that are being expressed.

As far as the patient's perspective, there are more engaged and less engaged patients. Less engaged patients don't understand the system and need more help and training. That was talked about at the last meeting - there needs to be more health care coaching available. For engaged patients, the baby boomers who are fairly bright, they want and need tools.

What my company does, Patient2Patient, is we put together Internet Health WebGuides. All this information on the Internet, no one can find it. We have a health staff that goes through, looks at thousands of listings, hundreds of sites, and we pull out the best sites; five in each of twenty-four different categories of information. A patient can then look at one of our WebGuides and say "Oh, for Alzheimer's here's the level of information I'm interested in, I like this source of information, let me go right there." You have a quick and easy channel right to the best information.

As far as information, you need to consider what is the point of intervention for information for patients. Should it come from the doctor? Should it come from the health care group? Where is the most effective place to try and reach patients so they start becoming informed? If a patient goes into a meeting with a doctor and doesn't know the background, then the doctor's time is going to be wasted on explaining the basics. That's not a good use of the doctor's time or the patient's time. The patients need to have the information ahead of time so the doctors can speak knowledgeably and it can be a higher level conversation.

The last thing I want to talk about and I think is very important are health care coaches. Trying to navigate the health system is impossible. There are twenty-four different categories of problems that patients, suddenly diagnosed with an acute illness, are running into. Treatment, finding a doctor, family problems, legal problems, - insurance problems, insurance problems, insurance problems... And finding on-line and other support groups and things like that. You need people who are trained in the system and there should be training programs. A one year associates degree or a two year degree so you can train other people so you have that intermediary. And I think that could be put in place as part of the programs that people are developing now.

The last thing is on content. Most of the content out there is terrible. If you're in charge of finding and buying 'consumer' medical content for a group or organization, look at it - see if you understand it. Most of it written in medical-ese because people think that's what's credible. It's not really easily understood. So you have to use your common sense and make sure that you are providing patients - your members, your groups - with something they can actually understand. Thanks.