What Do Patients Want?

Originally published in Health Information Management and Communications Canada magazine

Wednesday night is date night. Every Wednesday after work my wife and I walk to a nearby restaurant and enjoy a tasty meal and a lively chat. While this weekly event is not particularly noteworthy – many couples do the same – our topic of conversation is perhaps less common. Each week, for most of the meal, we explore the question: “What do patients want?” 

About 12 years ago Tracy was diagnosed with rheumatoid arthritis. Her life was dramatically and forever changed. 

Rheumatoid arthritis (RA) is an autoimmune disease. Tracy’s own immune system is attacking her joints, tendons, ligaments, bones, and muscles as though they were intruders. In addition, the medication she is taking to combat her RA leaves her vulnerable to viral and bacterial infections. Not a month goes by that Tracy is not battling a cold or some form of flu-like infection. 

A former technology executive and aspiring writer, Tracy decided a little over a year ago to use her communication skills and marketing experience to “speak for those whose voices are not quite loud enough and to provide perspective to those who want to listen.” 

Tracy’s first initiative is a blog entitled simply “This is my life” in which she offers a chronic disease patient’s perspective on a variety of topics. Not surprisingly, given my social media presence and professional focus on the health sector, I took an interest in Tracy’s work and she, in turn, solicited my input. 

As Tracy’s caregiver I am party to and, in some cases, an active participant in the patient experiences that influence her writing. This shared experience has transformed what started as basic mentoring into an active collaboration to explore and articulate the patient perspective. 

One of the early topics that Tracy and I explored was the patient perspective on digital health. Although she led and eventually sold an early Internet start-up and has edited all my published work, Tracy keeps telling me that she doesn’t understand what the term “digital health” means. 

As a digital health advocate, I was more than a little surprised to hear that Tracy doesn’t get “digital health.” The more I looked at the matter from a patient’s perspective and really thought about the words “digital” and “health”, I realized that her confusion might be warranted. 

In an April 2018 Forbes CommunityVoice™ post, cardiologist and engineer Dr. Joseph Smith succinctly captures my emerging views: 

“Disease processes rely on underlying complex biological, biochemical and neurological constituents that vary with time, temperature and myriad other continuous (read: analog) variables.” 

In other words, health is analog, not digital and the term “digital health” may be an oxymoron. At the very least, the term does not seem to resonate with patients. 

So, what do patients want? 

To prepare for their May 2017 annual gathering, the Council of Accountable Physician Practices (CAPP) sponsored focus groups across the country to compare patient and physician perceptions about what is most valuable in healthcare delivery. 

According to a June 2017 article by Dr. Robert Pearl, author of the bestselling book “Mistreated: Why We Think We’re Getting Good Healthcare—And Why We’re Usually Wrong,” the top three themes for both patients AND physicians cited in the focus groups were: 

1. Doctor-patient relationship 

2. Evidence-based medical treatment 

3. Care coordination 

Dr. Pearl notes that “neither patients nor doctors saw technology, including the electronic health record and online tools for patient engagement, as particularly important.” 

A U.K. National Health System survey of 200 patients in Buckinghamshire offers further insight into the nature of the relationship that patients want with their healthcare providers: 

To be informed clearly about their choices. 

To be listened to. 

To have their questions about their health answered. 

To take an active role in their healthcare decisions. 

To be treated with respect, empathy and compassion. 

If the phrase “digital health” doesn’t resonate with patients and technology is not viewed as particularly important, does technology have a role to play in the health sector? 

A McKinsey & Company report entitled “Healthcare’s digital future” contends that technology does have a role but notes that patients have been slow to adopt digital services because “existing services don’t meet their needs or because they are of poor quality.” 

The report further suggests that too much emphasis is placed on innovation when what patients really want is quite basic: “efficiency, better access to information, integration with other channels, and the availability of a real person if the digital service doesn’t give them what they need.” 

If I have learned nothing else as a caregiver it is that patients want to be heard, that they want people to really listen to what they have to say. They are willing to tell us what they want…we just need to engage them in conversation. 

You can check out my wife Tracy’s blog offering a patient’s perspective at themadnessmaven.ca

Advertisement

Hackathons: More Than a Spectator Event

This article originally appeared in Healthcare Information Management & Communications Canada

In just a few short years the Hacking Health hackathon has become a fixture at the annual Canadian eHealth conference.  While many eHealth attendees find the pitches and solution presentations highly entertaining (particularly with the high-energy Hacking Health co-founder Luc Sirois as the master of ceremonies), these hackathons are more than a spectator event … they are an opportunity for attendees to share their experience and expertise to make a difference.

Hacking Health held its first hackathon five years ago in Montreal.  Since then, Hacking Health has grown to 45 active chapters around the world.  In 2016, these local chapters organized and hosted 161 events including 28 hackathons.

I was initially skeptical of the value of hackathons.  In a December 2013 Technology for Doctors commentary, I noted that “for all the good intentions of those involved, I am not yet sold on the value of hackathons for the Canadian healthcare system, at least as they are currently constituted.”

I was reminded of my initial reticence when I attended the first Ottawa health hackathon in April.   While I must confess that I am not a fan of the over-the-top enthusiasm reminiscent of a multi-level marketing event that seems to be the hallmark of Hacking Health events, I enjoyed the opening night pitches until I noticed the Hacking Health tagline emblazoned on an organizer’s t-shirt:

“Bringing Innovation to Healthcare”

I have an almost allergic reaction whenever the word “innovation” is mentioned.   It has become an over-used word that is quickly losing any sense of real meaning.  As I proclaimed in my “Innovation Rant” at eHealth 2014, I am aghast that a word once reserved to herald inventions such as the personal computer, the cell phone and the Internet has been reduced to a marketing buzzword used to describe products as banal as peanut butter pop-tarts.

Equally troubling, is the “element of hubris to medical hackathons” described by Brian Palmer, Chief Explainer for Slate.  In an April 2014 article entitled “Are Hackathons the Future of Medical Innovation,” Mr. Palmer notes that there are many problems that experts around the world have been trying to solve for years and that there is no shortage of ideas for how best to address them.

If we consider the advances in medical sciences, it is hard not to think of the health sector as innovative. A March 2015 McLean’s article noted that “recent innovations in modern medicine are nothing short of miraculous,” citing kidney transplants performed with minimal surgical invasion via robots and prosthetic eyes that give partial sight to the blind as but two examples.

Yet, the same McLean’s article also observes that “despite advancements in the OR, something as simple as locating the right equipment, or the right doctor, can often leave hospital staff feeling like they’re stuck playing a game of hide-and-seek.”

A similar theme can be found in many of my wife’s blog posts on the patient experience.   Writing about wait times, Tracy (aka The Madness Maven) cites the impact that simple changes can make. For example, a screen that displays a patient’s first name and the number of minutes until they can be seen can have a dramatic impact on the patient experience and, she suspects, the organization’s bottom line.

So, while the Hacking Health vision is certainly ambitious and perhaps even a bit audacious, it makes more sense if innovation is viewed not as an outcome but as a means to an end.

Scott Anthony, author of “The Little Black Book of Innovation”, offers a simple definition of this outcome – “something different that has impact.” These impacts need not be momentous or life changing but, like the screen showing the current wait mentioned in Tracy’s blog post, are felt and appreciated by those to whom they matter.

When viewed from this perspective, the role of Hacking Health in driving change in the health sector is much clearer.  Quite simply, Hacking Health creates opportunities for people who might not otherwise collaborate to tackle healthcare challenges not easily addressed within the walls of any one organization.

The power of the collaborations that Hacking Health seeks to promote is enhanced by the diversity of the participants’ skills and experiences. While media attention of the recent Ottawa hackathon focused on developers, designers, and physicians (and ignored other groups such as patients), the collaborative process that Hacking Health promotes thrives on diversity.

This year Hacking Health is collaborating with the Canadian Institutes of Health Research (CIHR) and the Mental Health Commission of Canada (MHCC) to tackle workplace mental health and wellbeing at the eHealth 2017 hackathon.

The eHealth hackathon offers a unique opportunity for everyone attending the show to participate in the hackathon process.  I encourage everyone to spend an hour during the conference visiting the various teams as they develop their solutions.

Be more than spectator. Ask the teams what they are trying to achieve.  Offer your feedback.   Share your experiences.  You might just have the insight they need to make a breakthrough.  You might also learn something new that you can apply in your own organization.

You can check out  Tracy’s blog at themadnessmaven.ca

What is Best for the Patient?

First published in Healthcare Information and Communications Canada:

A little over two years ago I took a left hand turn in my career path when I joined a regional EHR program as their Project Manager. Having written and spoken about interoperability and digital health solutions, I wanted to “put my money where my mouth is” so to speak and devote my time and talent to realizing the vision that I so often advocated.

I am fortunate to be working with a dedicated group of people committed to making a difference for patients in Ontario. Whenever we are faced with a di cult situation or are choosing from what appear to be similar options, at least one member of the team always asks, “What is best for the patient?”

My wife is one of these patients.

Diagnosed about ten years ago with a chronic illness, Tracy recently embarked on a new journey to speak for those whose voices are not quite loud enough and to provide perspective to those who want to listen.

A talented writer, Tracy uses her blog to share her own experiences engaging the health system, offers insights on the view from the other end of the stethoscope (or, of interest to readers of this magazine, healthcare apps) and, from time to time, advocates for change.

Tracy has discovered, to her dismay, what others such as the McMaster Health Forum have observed: the patient is often not at the centre of care.

In a brief prepared to stimulate discussions by a citizen panel on strengthening care for people with chronic diseases in Ontario, the McMaster Health Forum notes:

“Health professionals don’t always work together to get people the care they need, despite this being important for improving patients’ outcomes.”

A briefing note prepared by the Institute for Clinical Evaluative Sciences (ICES) on variations in quality indicators across Ontario physician networks offers a similar perspective:

“Patients living with chronic disease have the best outcomes when they are treated throughout the progression of their disease, in a coordinated manner that engages all medical professionals involved in their care. However, in Ontario there has been a history of fragmentation of chronic disease care, leading to serious gaps.”

According to the McMaster Health Forum brief, access to their own health information can “help patients set goals for their health, manage their own care and better engage in decisions about their care with their providers.”

Unfortunately, the same brief also notes that there is “a lack of electronic health records that put all of a patient’s health information in one place” and, as a result, “patients also do not typically have access to their health information.”

As Internet pioneers and founding executives of several Internet start-ups (different companies before we met), Tracy and I both witnessed the creativity and innovation that was unleashed when entrepreneurs were given access to a platform (in this case, the Internet) on which to construct new applications and services

The banks recognize this same potential and are creating similar environments

to encourage innovation in financial services. Scotia Bank, for example, created the Digital Factory which they describe as a “hub for creation and incubation of new and partner-led ideas to deliver game-changing solutions for Scotiabank customers.”

Can the health system take a similar approach to encourage the development of applications and services to manage their own care and more e ectively engage their healthcare providers? Mohawk College and eHealth Ontario think so. They have partnered to create the eHealth Ontario Innovation Lab, an online, open provincial EHR platform that allows testing of digital health solutions in a virtual EHR environment.

Operationally and physically isolated from eHealth Ontario’s production environments, the Innovation Lab’s Virtual Lab Environment contains copies of eHealth Ontario EHR test environment assets and a fabricated, integrated EHR data set. These assets currently include the Ontario provincial client registry and the Ontario Lab Information System (OLIS), with the Ontario provider registry soon to be available.

Whether the eHealth Ontario Innovation Lab generates new and useful digital health solutions remains to be seen. At the very least, it provides developers with access to the provincial systems in which patient information is stored, information that patients can use to manage their own care and more effectively engage healthcare providers.

I recently shared Tracy’s blog with a friend of mine. He commented, with a wry smile, that we must have very interesting dinnertime conversations. We do. She inspires me each and every day to do what is best for the patient.

You can at themadnessmaven.ca

Healthcare Consumerism: Patient expectations are changing

You are in a maze of twisty little passages, all alike. The task seemed simple enough: book an appointment for a follow-up visit with an orthopedic surgeon in Ottawa based on a referral from an orthopedic surgeon in Toronto. Yet, by my third call, I was beginning to feel like I was in one of those subterranean mazes that characterized Colossal Cave Adventure, one of the first computer games I ever played. While logic and common sense finally prevailed and I was able to book an appointment, the experience reinforced my contention that patients are also consumers and will increasingly demand the same level of service from their healthcare providers that they do of other service providers.

Check out the rest the rest of my article at Technology for Doctors.

Mike

 

Patient or healthcare consumer? Is there a difference?

Where am I? Why am I having trouble focusing? Oh, wait a minute … that’s my hand … at least, I think that’s my hand. Why does it appear to be moving in slow motion and leaving a blurry trail in its wake? Oh, hang on, there’s my foot. It’s in a cast! Oh, now I remember … it’s all coming back to me now.

Check out the rest of my article at Technology for Doctors.

Mike

Happy New Year and an Apology

Happy New Year to our readers.  Both Mark and I are pleased that you take the time to read our blog posts and greatly appreciate your positive comments.  We look forward to interacting with you in 2011.

Like many people, I opted to take time off for the holiday season and generally unplugged from all online activities.  Just prior to taking time off I published a blog post exploring the concept of the roles that individuals play when using online health applications and resources.  This post generated several comments.  Unfortunately, since we moderate all comments on this blog, these comments were not reviewed and have not yet been approved for posting.  I apologize to those people who took the time to offer their feedback that I did not address these comments in a timely manner.

Mike

“Consumer” or “Patient” – Roles We Play

I have been involved in many conversations and listened to numerous presentations that use the words “consumer” and “patient” interchangeably, often in the same sentence!  While I will readily admit that we can get hung up on words at the expense of getting anything done, I think that the inaccuracy in our use of language can actually impede progress.    Such is the case, I suggest, with regard to the words “consumer” and “patient”.

While the debate as to whether the individual who is the subject of care is a “patient” or “consumer” may be heated, both sides of the argument seem to be focused on classifying the individual as either a “patient” or a “consumer”.  I contend that “patient” and “consumer” refer to roles that we play and that we can shift between these roles depending upon the situation.  I define these roles as follows:

• In the consumer role an individual will make choices of about the services that they need, when they need them and from whom they receive them. In this role, the consumer may engage service providers outside the traditional healthcare system such as a consumer health portal or consult with other individuals in on-line communities of interest.

• In the patient role an individual has made choices regarding the healthcare services that they wish to receive and are engaged with one or more healthcare providers for these services. Just as banks and courier companies are using ICT to streamline operations and engage their customers in ways and at times that are most convenient to these customers so too can healthcare providers use ICT to engage their patients.

Numerous surveys and studies confirm that Internet users have a strong interest in searching for information related to health and medicine and interacting with others who suffer from the same disease or condition.  Yet, despite this strong interest in using the Internet for health related purposes, many so-called “personal health record” applications have floundered.  Examining these successes and failure reveals a pattern of behavior that is best explained by categorizing the role in which the individual operated when using these applications as either “patient” or “consumer”.   Applications that are designed for the role in which the individual is operating are more likely to garner an active and engaged audience.

I think it is time to better define what we mean by the words “patient” and “consumer” and to be more careful about how we use these words.  The distinction is critically important to understanding how best to use IT to help people manager their health.

Mike

 

Using IT to Encourage Patient Engagement

The Delaware Medical Society is helping its members use IT to encourage greater patient engagement.   According to an article in HealthcareIT News, the Delaware Medical Society is “making web-based tools available to its members to boost doctor-patient communication and is also providing free personal health records to all state residents”  through a partnership with RelayHealth.

The Executive Director of the Delaware Medical Society, Mark A. Meister, Sr.,  notes that the “The primacy of the physician-patient relationship means that physicians are in the best position to have the greatest influence on patient care and the individual choices a patient makes.”  Physician endorsement of consumer eHealth applications and automated downloading of data from electronic medical record systems have highlighted in several studies that I have read as critical success factors in patient acceptance of personal health record and related consumer health applications.

Mike

 

Patient Mentors – A Novel Approach to Patient Engagement

My friend and colleague Dr. Kevin Leonard has, for the past few years, been passionately advocating greater patient involvement in their care along with greater electronic access to their personal health information.   While Kevin’s Patient Destiny initiative seemingly focuses on what he calls “One Patient, One Record”, I think that the essence of Patient Destiny has to do with transforming our healthcare system through greater patient engagement in all aspects of healthcare delivery, from policy through to medical practice.

Patient engagement can take many forms.  This morning, I read about what seems to a novel approach to patient engagement.  The Health Mentors Program at Dalhousie University in Halifax, Nova Scotia, provides an opportunity for approximately 550 first-year students from a variety of healthcare programs to gain a better understanding of the daily challenges of living with a chronic condition from adult volunteers.   Students enrolled in the program meet with the patient mentors four times per year and hear first hand from these mentors about their experiences navigating the health system.

Dr. Laurie Collins, faculty director for the Health Mentors Program, notes that the volunteers are eager to get involved:

“People with chronic illness don’t really get the care they’d like – in many cases they’re frustrated and dissatisfied … They really feel they’re contributing to the development of a better health care system.”

Mike

Use of Social Media for Patient Engagement

The latest Ipsos Interactive Reid Report offers some fascinating insights into the channels that people use for text communication.  While many of us in the health sector may still rely on email for text communications, there appears to be an overall movement away from email in favour of other text communications including Facebook, Twitter, Microsoft Messenger, and Blackberry Messenger.

According to the report, the average number of emails that Canadians receive in a week declined by 35% in a little over a year.  Study author and Ipsos Reid Associate Vice-President Mark Laver notes:

“These findings also have significant implications for those businesses that rely on email marketing for some or all of their business. These companies should be evaluating to see if social media platforms are an effective method for distributing their message.”

As the health sector rushes to catch up with other industries in use of electronic communications with their clients / patients, the choice of electronic communication medium needs to be carefully considered.  While many people have been encouraging physicians to communicate with patients via e-mail, we should be careful to not favour one form of electronic communications technology over another.  Technology continues to evolve rapidly and we need to be mindful of the shifts in user preference that technology changes engender.

Mike