Definition of Patient Centered Outcomes Research

The PCORI (Patient Centered Outcomes Research Institute) is looking for input on their definition of Patient Centered Outcomes Research.

If you are wondering what it might be, the current working definition is this (copied from their site):

Patient-Centered Outcomes Research (Working Definition)

Patient-Centered Outcomes Research (PCOR) helps people make informed health care decisions and allows their voice to be heard in assessing the value of health care options. This research answers patient-focused questions:

“Given my personal characteristics, conditions and preferences, what should I expect will happen to me?”
“What are my options and what are the benefits and harms of those options?”
“What can I do to improve the outcomes that are most important to me?”
“How can the health care system improve my chances of achieving the outcomes I prefer?”

To answer these questions, PCOR:

Assesses the benefits and harms of preventive, diagnostic, therapeutic, or health delivery system interventions to inform decision making, highlighting comparisons and outcomes that matter to people;
Is inclusive of an individual’s preferences, autonomy and needs, focusing on outcomes that people notice and care about such as survival, function, symptoms, and health-related quality of life;
Incorporates a wide variety of settings and diversity of participants to address individual differences and barriers to implementation and dissemination; and
Investigates (or may investigate) optimizing outcomes while addressing burden to individuals, resources, and other stakeholder perspectives.

As you can see from the definition, medical research done withe emphasis on patient’s quality of life and impact on their life and family is Patient Centered Outcomes Research. If you want to weigh in on the definition, head over to the “call for inputs” page on PCORI’s website.

Glut of Positive Reviews Online

Today, I came across this article in NYTimes about how Tripadvisor, Yelp and such sites are having too many positive reviews of restaurants and Hotels. The problem is that many of these positive reviews are commissioned by the business owners to give their business a very positive online image. Cornell researchers are studying how to identify the fake reviews from the real ones.

For an average consumer looking for a real review, there are a couple of options. One – look for the reviews which are the most critical of the establishment. These tend to be real. Also look for pictures posted by the users along with the negative review. If you can live with these type of problems, then the restaurant or hotel is for you. If not, look for a different one.

The other strategy is to look for the most recent reviews. If the most recent review is within the last month or week, you can believe it. This might also be a commissioned review but you are looking for consistency in the reviews. So if the negative reviews and the most recent reviews match in what they like and what they do not like, you have a good idea of what to expect in that establishment. I think this is enough information to decide if you want to do business with that establishment or not.

If you have any other strategies, please post them below.

Privacy in Mayo Health Site

Privacy settingsI was recently asked by a friend to vote for their essays on connect.mayoclinic.org. So I headed over to the site only to find that they require you to register before voting. Since registration would prevent duplicate votes, I felt that this is a fair thing to request of the voters. In the process of registering Mayo wanted me to tell them my birthday, name, city, state etc. Then they wanted me to share my health topics and concerns with them. I gave them all the information. The real surprise came on the last page  of “Privacy Settings”.

Take a look at the attached picture. The privacy settings are all set by default open to public (“Everyone”). Dear Mayo, we trust you to do the right thing. Unlike Facebook, please have our default privacy settings to be stricter than “Everyone”.