Digital Health - Leveraging Online Communities to Achieve Patient Outcomes

Online communities have been around for as long as the internet and many exist which deal with various healthcare related issues. Understanding the impact of these communities and how they can improve the patient's situation can help provide a substantial improvement in patient engagement and in patient outcomes.

The internet is a profoundly unusual medium. On the one hand it provides people with unlimited anonymity, theoretically allowing them to do or say whatever they like without fear of consequence or reprisal. On the other hand, the social nature of the internet and the fact that validation is instant and generally very blatant has turned it into something of a Garden of Eden for narcissists.

While some elements of the social contract (such as manners) are often outrageously disregarded by the internet community, certain other elements of the social contract are actually heightened by the individual's increased reliance on the community for their sense of self.

One element of the social contract which is amplified in online communities is that of responsibility. This was effectively demonstrated in this study which showed that when the individual is asked to commit to a group their sense of responsibility is substantially greater than the sense of responsibility felt when asked to commit to one’s self.

Further within online communities which revolve around common goals, whether shared individual goals or collective goals, the members develop complex relationships in which they begin to depend on one another for various forms of feedback both positive and negative to satisfy psychological needs.

This means that beyond the basic function of information sharing, communities are able to provide active members with validation, recognition, reward and satisfaction. These same psychological triggers are often listed amongst the drivers of continued success in many long-term health maintenance programs.

By leveraging this effect, online communities can provide a natural support mechanism for participants in collective health initiatives aiming at developing more positive habits and generally achieving a more positive lifestyle.

When considering the potential health outcomes of shared programs and broad initiatives this patient-patient relationship can provide a significant boost in engagement and commitment without burdening physicians with the responsibility of being the primary motivational driver.

Digital Health - Understanding the Challenges Facing Health IT Implementation

The goals set out in the CPEHN HealthIT plan, while lofty, are not beyond the ability of digital technology. Much of the plan is based on responding to patient data, either medical or demographic, in an appropriate manner.

Some key emerging technologies are already enabling a "responsive web" which will be able to identify individuals and provide them with the information most relevant to their situation.

Websites can already be built in such a way that they respond to user data (from a central database) and communications can be sent out responsively ensuring that the right message reaches the right audience.

As a non-healthcare "insider" there are several challenges which I have encountered time and time again when localizing materials and when attempting to construct systems which use data to provide more informed messaging. One example of these challenges can be found outlined in the CPEHN HealthIT plan, where they discuss the challenge with native Spanish speaking population’s use of the internet

Image care of CPEHN

One major challenge is that there is a heavily cultural element to localization which often only an "insider" can be aware of. Translating content, for example, is far less effective than having a semantic translation in which an expert in the local culture completely rewrites the message so that his audience will "receive" the same message as other readers, even though they will not be a literal translation. In this HIT has the distinct advantage of having many stakeholders within niche communities who have a vested interest in supporting this semantic translation.

Another challenge is the sheer quantity of groups that can be identified within a population as large as the United States (or even just the state of California). In President Obama's 2012 election campaign, he divided the country into 10,000 distinct groups, all of whom received different messages with the specific intent of ensuring maximum engagement with his audience. 10,000 distinct subgroups multiplied by just a couple of conditions is... well... a MASSIVE amount of content.

It has been my experience that in such an effort, it is necessary to develop the system to cater to the majority, and over time to expand it to treat the minorities. Trying to create a system from scratch able to cater to all the various minority groups identified within the healthcare system creates a project so lofty that it often struggles to take wing and leave the planning stage. However, by strategically implementing the key tools, using a staged release which constantly targets the largest groups not yet targeted, the project can be divided into achievable and manageable sub-projects each able to achieve some portion of the ideal result.

Technology can certainly be the key to the success of a project such as this. However, the unlimited scope of technology to implement change requires a very careful process of limiting goals to manageable, staged objectives and focusing on implementation and testing to ensure that the results desired match the outcomes achieved.

Digital Health - How the Human Touch is Harming Patient Engagement

In 2013 patient engagement is a hot topic in the field of health IT. Within this conversation one of the terms which is often used to describe the technological challenges involved in creating a digital doctor-patient relationship is the “Human Touch”. This concept reflects to all of the warm and fuzzy intangibles of humanity: care; intuition; instinct; etc.

When discussing health IT, or any other technology, the term "human touch" can be a very harmful term. The main reason for this is the insistence on the use of the word "human" which leads to heated debates as to the ability of automated processes or machines to provide a "human" element.

This debate quickly moves into a highly philosophical realm which can only be resolved by performing a Turing test.

The "human touch" is a means to an end.

When discussing engagement and communications technologies the outcome sought by adding an element of the "human touch" is actually the delivery of relevant, interesting, and personalized content which will drive patient engagement.

Using this definition we can now bypass the philosophical debate and engage in a conversation on the practical and the technical merits of creating such a system.

Technologically, it is possible to develop communications systems which respond to patient data both demographic and medical and use the information known about a patient to select the most appropriate content to deliver. These systems can deliver localized messages, discussing issues and conditions relevant to the patient, and can even alter the tone of the conversation based on the patient's responsiveness.

Moving into the digital health age, a focus needs to be placed on creating digital patient engagement without the need to involve the practitioner or his staff except at key points (such as regular check-ups or events requiring a doctor's attention). As such there is a need to fundamentally revise the 5 pillars of patient engagement described in the article.

Rather than focusing on engaging patients by "showing you care" patient engagement must focus on ensuring that the messages the patient receive are highly targeted, highly individual and provide the patient with practical benefit. The doctor in this equation should be more "hands off", while the patient should be assuming most of the "hands on" responsibility.

As health technology evolves it will be important to consider engagement as a practical function of any patient-facing system. Digital engagement technologies should be incorporated into the design of the systems to ensure continued patient participation and to enable the systems to achieve practical patient outcomes over the long term.

By leaving the “human touch” to the healthcare practitioners, health technologists can focus on developing automated systems to generate digital responses. By doing this, the goals of healthcare technology can focus on improving patient engagement and delivering value to both patient and practitioner. 

Digital Health - Has the Doctor-Patient Relationship Become a Doctor-Patient-Digital Technology Relationship

Using digital technology to complement health care has certainly become a hot topic for 2013. It comes with the change in health challenges going from infections and acute problems to having to deal with chronic illnesses like diabetes, heart disease and depression, even in the developing world. And that shift to having to deal with long term problems puts new reliance on a longer term relationship between patients/consumers and their health care team. At the same time, because health care has become a large expense for countries and individuals, there is a lot of pressure on health services to be more efficient, cutting down the time they can spend with a patient. Many health care services are trying to make up for that lost or sacrificed time by trying to find technology that can replace the relative vacuum.

But what does that mean for the relationship?

The term "patient engagement" has also become a hot topic. But it's not about marketing. It's about having a person feel sufficiently engaged with the service they are receiving so as to try and work with the health team to improve health or reduce risk. They talk about the "medical home" where there is a long-term relationship with a health team, and at the same time there is a strong push to come up with mobile technology and on-line programs that can make looking after your health more affordable and more accessible, even while it is more remote and not quite part of a "medical home". 

So the health industry is borrowing from marketing and talking about "patient engagement" and "gamification" - getting patients involved in their health care by thinking about ways that computer games engage their users, or non-health products attract a customer and keep them interested. It's not the golden arches, but it's taking something that has been part of the consumer market for decades, but not necessarily part of health care. However the challenges do not necessarily lie in convincing the practitioner to want to talk more to their patients or to want to be more directly involved in the day to day management and care of a patient in their care. It's a real problem: how do you automate compassion or empathy? How can technology recognise when someone isn't paying attention and missing out on better health outcomes? How does technology imitate intimacy and build trust?

There are a number of challenges involved in patient engagement in health care, but many of these are being faced when it comes to engagement in a lot of other industries today. There are some enlightened folk who seem to think there are no alternatives other than try to understand how we can replace, replicate, simulate or in some way fill the gap left when technology becomes the solution and personal contact, compassion, empathy, responsiveness, intimacy and trust can't be as heavily relied upon to build the doctor-patient relationship.

We know that the world has become hectic, and people are bombarded with thousands of communications a day in all sorts of attempts to engage them and to encourage them to act. These messages are primarily marketing messages, but in today's world where e-health and m-health are playing roles in health care, for a practitioner to engage their patient they have to compete with all of this "noise" just to get a patient to have a conversation, or to read an email.

It's not easy.

Add to that the fact that studies in behavioural economics (such as this one by Dan Ariely) have shown us that people instinctively are less inclined to act based on a long-term benefit than on a short-term benefit and you POTENTIALLY run into a wall.

Health, when we look after ourselves, is a VERY long-term benefit. Throughout our lives we've all performed that morbidity equation in our minds. "Well... I know it's not good for me... but it feels good now, and it only costs me years at the end of my life... and who wants to be old anyway?"

Today we struggle with the reality that patient motivation, looking not at taking some pills for the next couple of weeks but looking at decades distant horizons, is harder to achieve, that long-term patient compliance is harder still, and that most of the health industry has not yet learnt how to build long-term patient engagement in a digitally enhanced environment.

I'm not a health "insider", but since my first engagement in the health information space almost a decade ago, experience has shown me there are many companies who have fantastic SEEMINGLY customer-centric solutions which provide real benefits to their customers BUT struggle to build what marketers call "engagement" and the result is that they fail to “help the customer help themselves”

Whether we want to use a term more palatable to healthcare practitioners like "doctor-patient relationship" or whether we are prepared to accept that the body of literature and science on "engagement" is far broader and probably going to be more useful than that on doctor-patient relationships, better understanding engagement will be at the heart of the success of many healthcare technologies and innovations such as EHR. Our goal as healthcare innovators must be to understand how this understanding can help us engage patients and, really importantly, keep them engaged in the long run.

Digital Health - The Cost of Neglecting Patient Engagement

The new paradigm in communications has once again recognized the humanity, or more importantly the individuality, of the consumer and seeks to understand how to engage with these individuals.

The challenge has shifted away from the question of "how do we get the consumer to act?" towards a far more relevant question to the health industry of "how do we build a relationship with the consumer?"

The past few years have seen huge efforts made in better understanding consumer engagement and some amazing technologies are emerging to support personalization and to support improved engagement.

Patient and consumer truly have become synonymous, not because we are dehumanizing patients, but because they [marketers] have finally seen the wisdom of humanizing consumers.

Once we accept that this debate is largely semantic, the real question that we should be asking is "how can we benefit from this growing pool of knowledge about consumer engagement to enable the healthcare industry to improve patient engagement in a digital world?"

In his article “The 7 Habits of Highly Patient Centric Providers” , David Chase clearly defined the difference between engagement and compliance. In building a long-lasting interaction, it is no longer enough to assume that a patient will be compliant. Instead it will be necessary to develop systems which use common communication tools to build engagement.

If practitioners and health service providers hope to be able to use the same communication tools (email, phone, SMS) to engage their patients, it’s important to understand that they will be competing with businesses and even the president of the United States for the patient’s attention.

As such it will be important to understand the way in which people interact with communication today, and it will be critical to learn how to build systems which enable highly personalized patient engagement based on their unique situation and leveraging an existing personal relationship between practitioner and patient.

As EHR adoption skyrockets its success, or failure, will hinge on its ability to enable patient and practitioner engagement and to maintain that engagement over time. An unengaged EHR offers very little benefit over existing record management systems. The system itself must be able to provide real benefits to both groups, and to maintain this benefit through an intelligent engagement mechanism.

Without the patient being an engaged and active participant in the process we lose much of the benefit of digital health management. As we move into the digital healthcare age, patient engagement must be at the heart of any systems we hope to implement.

Even though most of my experience has been outside health, since my first engagement in the health information space almost a decade ago, my experience has shown me there are many companies who have fantastic SEEMINGLY customer-centric solutions which provide real benefits to their customers BUT struggle to build engagement and to “help the customer help themselves”

The biggest difference between traditional consumer markets and health care is that in traditional consumer markets the failure to build engagement results in poor sales results while in health care this failure results in poor patient outcomes and failed adoption of potentially life changing technology.