All opinions are my own and do not necessarily reflect those of Novo Nordisk.

With apologies to Sergio Leone.  And to you, for making you read that really bad pun.  Just move along.

In an engaging and thought-provoking perspective piece in the New England Journal of Medicine, Dr. Louise Aronson described her experience in getting treatment for her father, who was suffering from low blood pressure and other health issues.  Her father was admitted to the hospital and went through examinations and fluctuations in his health during his stay.  He seemed to stabilize but then his blood pressure dropped again and Dr. Aronson asked for someone to come and check on him.  The staff was polite but non-committal and she decided to perform an exam on him herself to check if he had internal bleeding.  He did, she obtained evidence, and her father received rapid care to prevent further blood loss. 

She relayed this story in the context of how health care providers often bin patients and their support networks into “good” and “difficult” categories, based on how much and how often those patients acquiesce rather than challenge or even seek information about ongoing treatments.  As she describes it, the staff “were polite, but their unspoken message was that they were working hard, my father wasn’t their only patient, and they had appropriately prioritized their tasks. ” Her message was that the medical profession needs a cultural shift,in which patients and their families whom are more actively engaged in their care are seen as an asset, not a detriment to medical practice.  She also suggested some practical elements that would help this, including tracking more clearly when patient engagement occurs and rewarding it through changes in billing codes and practices.

I found myself agreeing strongly with her sentiment while at the same time feeling uncertain about the overall article.  It took a while for me to figure it out, but I think the problem I had was in the story.  It’s a terrific example of effective storytelling to make a point.  At the same time, it relates the experience of a practicing physician in proving the established medical practice wrong.  A little like House.  And the same elements that make her message so powerful are the elements that might make her experience easier to dismiss.  As in, “well, sure, it’s important to pay attention to a credentialed Doctor like you, but really, how does that apply to the annoying spouse in room 6E who doesn’t know a bursa from a bedpan and wants to have his wife checked for leprosy?”  The authority she gets from having been on the side of the healthcare providers paradoxically weakens her message.  Her conclusion was also an example of results-based analysis seen from the context of the family and not looking at the larger picture of the hospital as a whole.

As I was reading one of the last paragraphs, this line caught my eye:  “From the history that so often generates the diagnosis to the treatment that is the basis of care or cure, active participation of patients and families is essential to optimal outcomes.”  At this point I began craving a reference or two.  This sentiment makes intuitive sense to me but I’d like to see evidence that this has been studied and is really the case.  Maybe my experiences as a baseball fan, where the conventional wisdom of things like bunting the man over to second is just plain wrong most of the time, has jaded me.  Research has too often turned conventional or intuitive wisdom on its head.  In this case it seems evidence beyond anecdote is needed to effect the change Dr. Aronson proposes, because it’s a fundamental change and change is hard.

To try and look into the question of evidence, I spent some time searching Pubmed.  Using keywords like “patient participation” and “outcomes” I did come across some interesting hints of evidence, such as a this one from Medical Care in 1989 (abstract only, paywall) or this one on patient empowerment and self efficacy in Health and Quality of Life Outcomes (no paywall).  On the other hand, this recent study from Family Research (again, no paywall) found studies on patient participation and outcomes to be inconclusive.  This is a problem since making strong changes to how health care providers interact with patients is likely to meet with resistance.  If even just allowing experienced nurse practitioners to have a greater say in medical treatments is an issue, how much harder will it be to get uniform acceptance that patient and family input is not just to be tolerated, but sought?

I’ll keep looking for past studies, and at the same time I’m hoping this is a question that gets increased future research attention. The world of healthcare is changing in substantial ways due to digital and online tools, and that change isn’t just restricted to the practitioners.  The question of patient/family/healthcare provider interactions is becoming more complex.  It’s not just that patients and families know the patient more intimately; they also may have gathered information from online sources and patients’ groups as well as collected data from personal monitoring tools, all of which potentially allows them to provide even more value to the patient’s health.

Imagine for example a patient who has been quantifying her caloric intake, heart rate, and blood pressure under many different circumstances and over several years.  This kind of data is invaluable for providing a baseline that healthcare providers can use in gauging whether a heart rate is well outside the normal parameters and therefore worthy of attention.

This all needs to be studied, and not just once but in an ongoing way since new tools and new ways for patients to be empowered are being developed every day.  And this also has to be studied under the concept of opportunity cost and overall health across all patients in a given system.  Patient and family engagement isn’t just a positive.  David Shaywitz, in an article he wrote back in 2006, described how family engagement can have both positive and negative effects on patient health–negative when an overbearing family or patient leads to minimized care for that patient due to healthcare providers pulling back.  In addition, hospital staffs are responsible for hundreds of patients and have developed methods to prioritize which ones receive care and how much time and care each patient receives, based on perceived and diagnosed health status.  Would having patients and families routinely jumping the queue lead to overall better outcomes across the healthcare organization?

Taking the time to listen to a patient and his or her family means less time for others.  It’s perhaps a little too easy to say that it should be part of the job and doctors and nurses should make the time.    Unfortunately that’s one thing you can’t make.  You can only choose how to divvy it up.  Making the time for everyone to be heard means we’ll have to spend a lot more money and train a lot more people to be healthcare providers.  And too, as patient/family engagement goes up, so will the false positive problem.  Not every family that notices “something wrong” will be correct.

I do believe that better and greater patient and family engagement, especially as patients become more informed and savvy, will be a net benefit to healthcare systems, and that the higher costs and demands on healthcare providers will be more than offset by improvements to overall population health.   It would be great to get the data to see if this is really true.