As I’ve blogged before (here and on e-patients.net), I’m one of the advocates (the Challenge Team) for this year’s TEDMED “Great Challenges” program, co-sponsored by the Robert Wood Johnson Foundation – specifically, of course, The Role of the Patient!
They asked us (the team) to answer five questions. (The original list is at bottom.) I haven’t yet – you can see the other team members’ responses here – for two reasons: I was immersed in my travel and events season, and (probably more importantly) something didn’t sit quite right with me. I figured it out:
It’s upside down to ask us some pre-selected questions – that’s precisely getting “the role of the patient” wrong. So I thought: let’s ask the crowd! Ask the internet what they think the role of the patient is and what it should/could be.
I gave the questions to my friends at Traitwise (see earlier post Engage, Participate, Enjoy!) Traitwise is an interactive, self-adjusting survey tool that responds to user questions. (I have no stake in the company; I just love the idea, because it harnesses the crowd and lets you discover thoughts instead of trying to guess them.)
You don’t just answer the questions – you can comment on them (including suggesting changes), and you can propose questions of your own. And those questions become part of the survey for future respondents. There’s more discussion below, but here’s the survey – dive in!
About the survey
In this survey you’ll find the original questions they asked the Challenge Team, rearranged to be more open-ended – and, I think, to have less implied bias in some of them – and we added a few that we thought would open broader thinking about the subject. The rest is up to you! What do YOU think the role of the patient is, and should be?
Nifty: you can return later and add thoughts.
The different between pre-planned and open-ended:
In a way, putting the questions in survey form is the same as having a dialog on a blog, except it tallies thoughts: you take the questions, you can comment on the questions, including suggesting changes, and you can propose questions of your own.
And in a sense, it takes the burden off the survey designers to get it right: they can take a reasonable first pass and float it out there to collect responses and feedback. Then they can let it run, or decide it needs to be done over.
Mind you, not every kind of survey is right for this: if you want to know if someone’s going to vote for Romney or Obama, it doesn’t need to be interactive. But if you’re trying to find out what people are thinking, why limit the answers?? Why not let them tell you?
It’s an experiment. Enjoy. Bring friends – see what they think, and what they have to say.
__________
The original questions
For the record, here are the original questions as given to us by the TEDMED team. How do you feel when you read these, compared to the survey you just took?
- Name the top 10 contributing factors for the Great Challenge, “The Role of the Patient”
- Is there a conflict between empowering patients and honoring the expertise and authority of medical professionals? If so, what are the tradeoffs and how do we find the best balance?
- How can patients be supported as informed decision-makers and advocates within complex health care systems?
- As many patients become more technologically savvy, how can they and their providers make the most effective use of different technologies to facilitate collaborative decision-making?
- What are reasonable and unreasonable expectations of patient responsibility in the delivery of health care?
A a patient & researcher, I find the original question 2 to be offensively worded. Any question about patients where “laboratory animals” could be substituted has got a serious problem. I have a Ph.D., but I always tell people, “Don’t call me ‘doctor,’ just because a long time ago I did well in school. If I deserve respect that will come across in our interaction. If I don’t deserve respect, calling me doctor would be a mockery of the title.” Medicine is about patients, and we seem to have lost that philosophy in the medical system. A better phrasing of question 2 would be,
2. Is there ever a situation where a medical professional’s judgement should be preferred to the choice of a patient? How should we balance the medical professional’s responsibility to convince the patient of the correctness of his/her recommendation versus his/her responsibility to do what he or she believes is right independent of the patient’s desires?
So, Pete, did you take the survey?? I won’t dig into it again right now but I think we broke that apart in the Traitwise version.
I think that TRUST goes a long way. Trust is achieved over time. The best way to develop trust is to NEVER leave the patient to their own devices to figure things out. When a patient must wait days for a phone Rx for vomiting, when pain issues are not adequately addressed, when physicians negate or discount your symptoms this does not build trust. According to regulatory agencies such as JCAHO, pain is considered the 5th vital sign. In continuing education regarding pain, it is said that the patient’s description and degree of pain is the reality. Unfortunately, the reality is that that’s only true in literature and to satisfy documentation criteria. I rarely hear physicians ask patient’s about their pain.
I have frequently observed physicians judging a patient’s pain. I find physicians to be merely prescription writers, do not consider obstacles that patients encounter, and I am pretty sure they don’t care. I think that patients should make entries into their own charts with each healthcare/physician encounter. The patient’s own progress note, to be made an official part of the patient’s chart. Too often, the progress notes do not reflect the reality of what occurred in that visit, the issues addressed, the patient’s understanding/perception.
I think that with each physician encounter, a patient response regarding their perception should be required. The patient has the right to refuse to enter a progress note, but a patient signature should be required.
Doctors are often placed on pedestals. I personally have known many physicians who have been incarcerated for drug trafficking, drug abuse, trading drugs for sex, etc. Impairments such as drug use and psychological problems know no boundaries. Everyday, patients are expected to relinquish control of their own well being and comfort to those who have no right to be trusted.
I think there are key indicators of system best health:
1. The health team (people, their caregivers and clinicians) mutually set goals and plans for best health outcomes
2. Tools and relationships maximize the ability of the health team to follow plans set to meet mutual goals
3. Accessable evidence supports just-in-time health decision making by people and their caregivers
4. The entire health team works from the same goals and data set.
5. Transparent health care costs
6. Healthy health care organizations
7. Hardwired continual learning based on evolving experience and evidence
8. Alignment of financial and human incentives for best health
The original questions would benefit from better wording, but seem to reflect the lack of patient contribution to create them. IMHO, the Challenge suffers from not understanding it is both the Patient Role and the Clinicians Role that need to be transformed to achieve genuine participatory care. The questions but too much onus on the patient to change. We must get to a place where clinicians BELIEVE in patients and their contribution, and behave in a way where that contribution is not only essential, but nurtured and integrated into the care. Hard stuff, but we’ve known for years – in the field of motivational interviewing – that the skills of the practitioner play the most important role in patient/client outcomes. We don’t understand yet: that the patient/consumer is PART of the intervention. That’s big change on the training, credentialing, incentives and all that the health system deems important.
Challenge Team Member Theresa Brown began to nail this with her comment on question 2, “Authority in health care situations should never be perceived as a value separate from expertise”. Now twist this to ask (New Question 1)- What are most important contributing factors ensuring the Health Professional Role views patient experience and contribution at the highest level alongside their medical expertise?
Thanks for educating us about Traitwise.
Survey was fascinating, and kind of addictive. I got through 360 before I cut myself off! The original 5 questions seem very paternalistic, as though patients need to be guided like small children toward an already-identified “good place”. Meh.
Hi Dave, is the survey still open?
Great survey. One of the issues it did not address is health literacy. What percent of the public feels they don’t quite understand the short explanations they get in doctor and nurse office visits?
Some of the use of internet by public is to “follow up” with more information from frustratingly short explanations in the office.
Some believe better reimbursement of what is called “patient education” would help prevent many complications of misunderstanding about treatments.