The Re-Engagement of Patients - 2014 & Beyond - Part 2

In my last post, I reviewed the evidence that patients are less engaged in their healthcare decision-making today than they have been in the past. I also listed a number of ways that this disengagement is being addressed including: patient access to healthcare information & communication with their providers through patient portals, Patient-Centered Medical Home certification, Meaningful Use Stage 2 qualification, etc. I don’t believe that any of these will be particularly successful at creating patient re-engagement, & I suggested that peoples’ surprising preference for using public social media (Facebook, Twitter, YouTube, G+) to share personal health information (PHI) & create communities around diagnosis & shared experience is a trend that has already taken off. The cited pwc study[1] showed that 90% of 18-24 year olds (28 million people[2] 2) would trust healthcare information on public social media sites & that 56% of 45-65 year olds would engage in healthcare activities on public social media sites (that’s 47 million people aged 45-65[3]). Adding in estimates for the rest of the population it appears that somewhere around half of the U.S. population has or would share PHI & engage in healthcare activities on public social media. It seems shortsighted to not plan to utilize this fact as part of healthcare reform. Patient re-engagement specifically could benefit from using this tendency for trusting & using public social media.

There are two other aspects of the effort to use peoples’ engagement with electronic activities to affect patient re-engagement. The first is electronic gaming. According to the Entertainment Software Association, 58% of Americans play electronic games[4]. Games are starting to play an increasingly important role in healthcare, especially in the treatment of chronic or serious conditions[5] & could be incorporated into the interactions of patients, caregivers, providers & community members to provide a new type of engagement. Finally, there are an estimated 6000+ healthcare & fitness apps available for smartphones & other platforms. The FDA reports that approximately 500 million people will be using such apps by 2015[6].

How could these three trends be used to re-engage patients in making their healthcare decisions? The first possibility I can think of is to integrate information & interaction people have with public social media into their healthcare provider’s clinical workflow. I know, there are a lot if issues with this, but if half the population in the U.S. is ready to interact on public social media regarding their healthcare, it seems foolish not to try this integration. There seem to be a number of real impediments that would have to be addressed.

·          The first is that providers (doctors & other healthcare professionals who interact with patients & make clinical decisions about their care) are not at all fond of having their workflows, that is exactly how they interact with patients, changed – especially if they are not initiating the change. Providers are about improving outcomes for patients & many of them feel that they have already made huge changes in adopting electronic health records (EHRs) into their workflows without seeing much measurable improvements in patient outcomes. Now we would be introducing an entirely new (for the vast majority of providers) dimension of interaction, one that is more immediate, & possibly more intense than their current interactions.

·          Another part of the workflow issue is that clinical workflows are not standardized, even within specific areas of medicine. They are more so now with the use of EHRs that have an implied workflow associated with them, but most EHRs are configured differently for different specialties: primary care, cardiology, behavioral health, etc. This would have to be taken into account in the integration.

·          Second is that providers are very skeptical of patient &/or caregiver provided information, especially in Personal Health Records (PHRs) & online. Part of the issue with PHRs is that they are not a good medium for use of both patients & providers – they must be simple enough for patients to use but not so simple that they are ineffective for providers to use in treatment. This is even truer of information that patients post online as they may have other motives (than provision of information for treatment) such formation of community.

That’s probably enough limitations. It seems as if the benefits outweigh these limitations so that a real effort can be made to overcome them. These benefits include:

•        The possibility of using both public social media interaction & the information posted in social media streams as part of the task flow for the provider/patient relationship, & that this would improve the providers’ ability to react, both clinically & personally.
•        The possibility of having information to work with that a provider would not normally have; such as the patient’s work/life balance, family issues as expressed in social media, patient’s interaction with community of people with similar medical problems (uncovering their opinions of current & past treatment, fears & hopes for treatment, etc.).
•     The possibility of creating a more trusting & therefore more reliable means of facilitating provider-patient communication & interaction.

These are not the only potential benefits, but they do provide the very real possibility of more informed, reliable & productive provider-patient interaction that could result in measurably improved outcomes. This would require education & evolution of attitudes & behaviors on both sides in order to work (& possibly changes in the written HIPAA guidelines or their interpretation & enforcement), but the fact that up to half of the U.S. population may already be using public social media or may be predisposed towards using it for healthcare purposes makes this an easy – although hard to implement & deploy – recommendation.

Two additional aspects of this evolution might make it easier & more palatable; at least for patients. The first of these is gamification. This does not mean that all or most interactions are done in the context of a game. Actual games, for instance, are not very effective at information gathering & transfer. It does mean that principles of game design & play are used to design the interactions. These would include: goal setting (self), leveling, reward structure, meaningful choice & narrative feedback[7]. Using these design principles for patient interaction (through social media) may result in greater engagement by patients, as interaction becomes both more effective & interesting to them.

Another aspect of information gathering & provider-patient interaction is the use of healthcare related apps on smartphones & other devices. If, as the FDA estimates, there will be 500 million users (worldwide) of such apps by 2015, they also should be integrated into clinical workflows in order to take advantage of the information stored in such apps & the interaction style provided by them. Many of these apps are already “gamified” to some extent  & store information in formats that should be easily shared with PHRs & even EHRs. The introduction of such apps, or more likely, the development of such apps for integration into clinical workflows could be a game-changer in terms of patient & provider engagement.

One other thing to take into account is that there are several commercial efforts underway to provide private social media for healthcare organizations, see, for instance WellFx (www.well-fx.com) or PathCare (http://www.pathcare.co/). Many large organizations (Kaiser Permanente, Partners Healthcare, etc.) are also developing & providing their own private social media apps, either as add-ons to their patient portals or as stand-alone applications. I believe that these efforts will not succeed unless they are connected in some way to the public social media that people are already committed to using.

Of course, the only way to really know if the integration of public social media & gamified healthcare apps into providers workflows can be effective is to do it. Pilots will allow the evaluation of the feasibility of such integration & provide vehicles for testing a variety of paths to achieve such integration. Let’s “just do it”.

Look for my next posts:

•         What exactly is workflow integration in healthcare?
•     Exclusive – I talk with the Future!

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[1] Social Media “Likes” Healthcare – From Marketing to Social Business. pwc Health ResearchInstitute. April 2012.

[2] http://www.research2guidance.com/500m-people-will-be-using-healthcare-mobile-applications-in-2015/

[3] http://www.census.gov/population/projections/data/national/2012/summarytables.html

[4] http://www.theesa.com/facts/pdfs/ESA_EF_2013.pdf

[5] http://www.rwjf.org/content/rwjf/en/search-results.html?u=&k=games

[6] http://www.research2guidance.com/500m-people-will-be-using-healthcare-mobile-applications-in-2015/

[7] Reality is Broken, 2011, Jane McGonigal, Penguin Group (USA) Inc., NYC

The Re-Engagement of Patients - 2014 & Beyond... Part 1

One of the core principles of healthcare reform is that consumers of healthcare (patients & their caregivers) would take an increasing role in collaborating with their healthcare providers in making decisions about their care. This would result in lower healthcare costs, as consumers would in general select lower costs options for care & potentially choose to receive less care (i.e. at lower cost) than their provider might choose without this collaboration. It would also lead to improved outcomes because the consumer would be more deeply engaged in the content of their care & might be more consistent in following treatment regimens, for instance being more consistent about taking medication for chronic conditions such as diabetes. This principle is made concrete in the Meaningful Use criteria for Stage 1 & Stage 2 on patient access to their healthcare data & in the efforts & programs such as patient-centered medical home and the patient portals made available by many provider & payer organizations.

Recently, however, there appears to be evidence that consumers (patients, people) are less engaged in their care then they were previously, & that the underpinnings of this engagement in Federal programs have also been de-emphasized. A recent survey by Deloitte Center for Health Solutions[1] found that 1 in 3 healthcare consumers were not actively engaged in their own healthcare & that 2 in 5 consumers were less actively engaged in their care in 2012 than in 2008.  In addition, several other reports found that consumers don’t want to be making healthcare decisions & don’t feel as if they, or their caregivers, family etc., have the information or the understanding to make them[2]

The question then becomes: what can be done to re-engage people in making decisions, in collaboration with their providers & caregivers, about their healthcare? Several paths have been proposed including:

•         Qualification for Stage 1 & Stage 2 meaningful use (CMS) incentives – As originally proposed, both Stage 1 & Stage 2 of the CMS meaningful use criteria had patient engagement requirements in the form of making healthcare information directly available either as electronic copies of healthcare records or through electronic access. Unfortunately, while provision of electronic copies of selected information is still required (>50% of patients within 4 business days, Stage 2), the provision of electronic access by patients to their healthcare records is no longer required for either Stage 1 or Stage 2. This greatly reduces the effectiveness of the meaningful use requirements with respect to re-engaging patients.[3]
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•         National eHealth Collaborative (NeHC) Patient Engagement Framework – The NeHC framework is roughly aligned with the meaningful use guidelines before they were dialed-back by the ONC. For “Stage 2” it emphasizes criteria such as:

o   Availability of quality & safety reports on providers, hospitals, etc. along with patient ratings for same

o   eTools for care plan management & secure messaging (to provider)

o   integration of EHR & patient’s PHR

o   electronic sharing of patient information with other providers(HIE & secure messaging)

o   patient generated EHR data

o   eReferral coordination, &

o   ambulatory & hospital record integration

Given the misalignment of this framework with current proposed meaningful use criteria, it is unlikely that it will have the desired impact on engagement.

•         PCMH – A set of guidelines for the improvement of primary care through the use of care teams & better coordination for continuity of care & care transitions. These guidelines were first proposed by professional medical organizations (American Academy of Pediatrics & others). There are several certification or recognition programs including the AAAHC accreditation & NCQA recognition program. At this time, less than 5% of providers in the U.S. have PCMH accreditation or recognition, although the program is influential.
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•         Patient Portals – With a few exceptions, most “patient portal” efforts have been actually focused on either information gathering for provider or provider’s staff, administrative functions such as making appointments or both. Kaiser & Geisinger are usually pointed at as examples of patient portals that have been successful because they are focused on patient needs. However, even these have been the subject of much criticism. Portals are criticized because they: don’t allow access to the entire record, don’t facilitate portability of PHI, don’t allow for patients to change or correct information, don’t allow the integration of PHR with clinical records etc. Patient portals have the possibility of facilitating engagement, but their relatively low adoption rate & lack of real patient-centered capability limits their effectiveness at this time.

These approaches, & others currently underway, to enable patient re-engagement are based on a set of ideas that patients will engage with their healthcare organizations & providers through the means defined by meaningful use & efforts such as the NeHC framework, namely by reviewing copies of their EHR records (or extracts of them), secure messaging with their providers, generating their own PHRs etc. Operating as a medical home allows a healthcare organization to provide more opportunities for patient engagement as many of the guidelines pertain to care continuity & transition that includes the patient & caregivers as part of the process, but the interactions are still mostly limited to conventional means, as with the meaningful use & engagement framework(s) reflected in the design of patient portals.

The fact is that consumers (patients, caregivers) already are engaged in finding information, making decisions about & managing their healthcare through public social media & through use of healthcare-directed apps on smart phones & other devices. There are close to 6,000 health & fitness smart phone apps & an immense amount of healthcare-related activity on social media sites such as Facebook, YouTube, Twitter & Google+. A survey last year by the pwc Health Research Institute[4] found that over 50% of the age group 18-24 had posted personal health information (PHI) on social media sites & that 80% of them would share PHI & that 90% would trust healthcare information discovered on social media sites. In contrast, 45% of people 45-64 would be likely to post PHI, but 56% of them said they would engage in healthcare activities discovered on social media sites. The 25-44 year old group was, as might be expected, intermediate between the other two groups.

Social media is not the only new element of the technology & media fabric where this & even higher levels of engagement are current. The same is true of online gaming of all kinds & use of health & fitness apps on smartphones & other devices. This type of engagement, especially in the critical 18-25 year old demographic, must be utilized in order to have consumers re-engage with their healthcare. The hypothesis is that alignment of clinical workflows & doctors’ communications with patients with public social media, gaming & use of apps can facilitate patient re-engagement. The real trick will be how to do it (see Part 2 of this post).

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[1] The U.S. Healthcare Market: A Strategic View of Consumer Segmentation. Deloitte Center for Health Solutions. ©2012

[2] Meill & Ericson. The Trouble with Treating Patients as Consumers. http://blogs.hbr.org/cs/2012/01/the_trouble_with_treating_pati.html (accessed 3 June 2013),

Nease, R.F., et al. Choice Architecture is a Better Strategy than Patient Engagment to Spur Behavior Change. Health Affairs, 32(2):242-249. 2/2013

[3] http://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/Downloads/Stage1vsStage2CompTablesforEP.pdf (accessed 2 December 2013)

[4] Social Media “Likes” Healthcare – From Marketing to Social Business. pwc Health Research Institute. April 2012.