**Transcript of Cyberseminar**

**Spotlight on Evidence-based Synthesis Program**

**Mobile Applications and Internet-based Approaches for Supporting Non-professional Caregivers: A Systematic Review**

**Presenters: Edward Dyer, Joe Francis, Kathleen Frisbee, Devan Kansagara, Keith McInnes,  Neil C. Evans**

**February 25, 2013**

**Mobile Applications and Internet-based Approaches for Supporting Non-professional Caregivers: A Systematic Review**

**February 25, 2013**

*This is an unedited transcript of this session. As such, it may contain omissions or errors due to sound quality or misinterpretation. For clarification or verification of any points in the transcript, please refer to the audio version posted at www.hsrd.research.va.gov/cyberseminars/catalog-archive.cfm or contact:**Devan.Kansagara@va.gov*

Dr. Kansagara:Hi. My name is Devan Kansagara. I am here in Portland, Oregon, at the Portland VA. I am the director of the Evidenced-based Synthesis Program and I will summarize the systematic review our group recently concluded on Mobile and Internet Approaches for Supporting Non-Professional Caregivers. 

My group will speak for about 25 to 30 minutes and then Doctors Kathy Frisbee and Neil Evans will give an overview of the Clinic and Hand Program in Mobile Health at the VA. 

So that said, my job is to describe review. Kathy Frisbee can describe a little bit from the stakeholder’s perspective why this review was requested in the first place. 

Kathy Frisbee:Yes. So and I would be happy to—this is Kathy Frisbee—and we requested this review because we had been given some funding to support the first mobile app, a pilot project in the VA. And the target population that was selected are those individuals in the Family Caregiver Program, the VA’s Family Caregiver Program. 

And so what we were interested in knowing is exactly what has been done in the past in terms of technological support for caregivers in supporting them with the burden and stress associated with the caregiving role. So that is what we asked for.

Dr. Kansagara:All right. Thank you. So with that, I will just launch in. The first few slides I will just breeze through very quickly, if I can get them moving here.

Heidi:Just click on them once and then you should have control and you can move through using your mouse.

Dr. Kansagara:Okay. Okay, sorry about that. So the first few slides I will basically just point out that these are summaries of our Evidence-based Synthesis Program, what the program is and links in case you are interested. 

We are a set of four systematic review shops across the country that conduct evidence syntheses on a broad variety of topics for various VA stakeholders, so I will not belabor these points here.

So the overview for our talk today is to talk very briefly, and Kathy already spoke a little bit about the rationale for this particular evidence synthesis. I will describe in some detail the methods we use and then of course give you a brief overview of our results. This, because of time, I will not be able to get into a lot of detail and our report will be available and there will be a link at the end of the talk to the full report, which has quite a bit of detail in it.

Then we will switch gears a little bit and Keith McInnes will give a few minutes of perspective from a VA researcher who does research in health IT; and then, as I said before, we will hand it over to Kathy to discuss Mobile Health in the VA and the current state of that at the VA. Then we will have time for questions.

So again, I think Kathy will talk a little bit about this, so I will speed through these background slides fairly quickly. These slides basically say that it will not be a surprise to anybody that many patients and many of our veterans depend on caregivers to help them with chronic illness care and disability. And many of these caregivers will seek health information online and also will seek peer support with one another. And not surprising to anyone is that our world is changing rapidly and that the use of technology is rising very rapidly, and access to the Internet has risen dramatically and this also holds true for veterans and non-veterans alike.

Of note, most adults have cell phones and increasingly adults are using phones to access the Internet.

So as Kathy had described, the VA is committed to increasing access to consumer health information technologies, or CHIT for short, for caregivers of chronically ill or disabled veterans. And I will just point out that we will use the acronym C-H-I-T, CHIT for consumer health information technologies here on out, and these are used to describe the broad collection of health IT applications for consumer health. As I will say a little bit about in a moment, these can be mobile apps or on other platforms as well.

Our review objectives were several-fold. The first was to identify studies of CHIT or consumer health information technologies designed for nonprofessional caregivers; then examine the usage of these applications; examine their effects on caregiver burden and patient outcomes; and then importantly to identify gaps in the literature.

And to guide this review, we had three key questions, the first of which was: How does the use of Consumer Health Information Technologies by nonprofessional caregivers of adult patients with chronic illnesses or disabilities, or by such patients who rely on a nonprofessional caregiver affect caregiver and patient outcomes?

The second question acknowledges our anticipation at the outset of the review that we would find a relatively young literature and might need to look at other sources for lessons. So we asked the second question, which is: What lessons can be learned from studies evaluating Consumer Health Information Technologies that specifically target the parents and caregivers of children? So this is a little bit unusual for many of our reviews. We usually do not go to the pediatric literature, but we thought for this particular topic that the lessons about health information technology in caregivers in this literature would be quite relevant.

A third key question is just asking what are major gaps in the Consumer Health Information Technologies literature with regard to technology development, availability, and/or evaluation?

Our study selection. The studies we included had to enroll nonprofessional caregivers of adults or children or report specific caregiver outcomes. We were looking at caregiver-facing interactive technology, and this could also be patient-patient technology. And we did not limit studies based on device or platform.

In other words, because we felt that if there was a web-based technology that it had originally been designed for a pc, we felt that that could easily be adapted to new smartphone technology, and that would not necessarily be a limiting factor. So we still looked at those studies; and quite honestly, we had known that amount of studies that we would find specifically having to do with smartphone technology and mobile applications would be relatively small, so we wanted to cast a broader net.

We excluded studies that looked at non-interactive technologies such as kind of passive education material, or in other words studies looking at interventions that were simply electronic versions of paper pamphlets. 

We were not able to look at studies involving telephony, interactive-voice-response or synchronous telehealth. And while these are very important interventions and worth looking at, these were outside of the scope of our review and have also been reviewed elsewhere in digimatic ways. 

We also did not look at fixed home-monitoring technologies. 

We used this intervention taxonomy to help guide categorizing the types of interventions that these studies represented, and they are listed here. In our report, we detail exactly what each of these mean. Of note, there is no widely agreed upon taxonomy and this taxonomy comes from an AHRQ report that one of our coauthors, Susan Woods, was a part of and also from some expert discussion. 

Our search: we searched multiple databases, and again we cast a fairly wide net. We included a review of conference proceedings listed here.

I am sorry that this slide does not project very well, but this is just simply the flow diagram, the literature flow. We identified nearly 2,700 abstracts. From these we identified nearly 400 potentially relevant full text articles, read through those and discarded 331 of those that were not relevant. From these we ended up with 31 articles of 22 interventions in the adult category and 26 articles with 22 interventions in the pediatric literature.

So a quick overview of the adult literature results. As I said, we found 22 interventions. Not surprisingly, a majority of these offered some educational content and used one of several different communication modalities. The common ones are listed here: online peer support, online access to providers, and general disease information and education.

Unfortunately, we are not able to do a meta-analysis or give you any sort of quantitative assessment of what the impact of what these interventions are on different outcomes, and this is because most of these studies were quite small. They vary greatly in the outcomes measured and many of them had methodological weaknesses, not to mention the diversity of intervention studies. It makes the assessment of health outcome or utilization of effects quite difficult.

Nevertheless, we did identify some broad themes and we will share those with you here today just briefly about the outcomes.

So again, caregivers’ outcomes were a focus of our review; and in our report, we detail what each study found. But again, it is hard to summarize in a slide or two what the take-home point in caregiver outcomes was partially because of the broad variety of metrics and some of the methodological issues I brought up before.

Only three studies included in our review examined patient outcomes and they are listed here. Only a couple of studies looked at care utilization outcomes, and we will talk about the Glynn study here in a moment because it was a VA study. 

Next, what I would like to do is just give you some examples of interventions that we found. We also do not have the time to go through every intervention we found, and these are not meant to highlight the best or methodologically most sound interventions. We just chose a few examples that might be more relevant for patients in the VA healthcare settings.

The first intervention was the CHESS intervention, which stands for the Comprehensive Health Enhancement Support System. The objective of this was to improve lung cancer caregiver coping strategies. The intervention was a combination of web peer support, expert care and some training. This was a recently well-done study. They included 285 patients over two years and they enrolled patient caregiver dyads. Of note, the control group also received a laptop and a list of websites including websites for high-functioning dyadic care groups and so forth. They just did not receive web access to the CHESS intervention itself.

The authors found that the intervention group demonstrated improved coping compared to controls. They felt this improved coping was mediated through increased bonding and they felt that the intervention personages were better able to share feelings, emotional support, had more emotional support, et cetera.

They speculated that the increased community with the formal and closed membership groups around a common patient condition was the thing that was most instrumental in mediating that.

The VA intervention: this is a small study but I mentioned it because it was the one VA intervention we found in the adult literature. It was by Glynn in 2010. Their objective was to improve patient-caregiver relationship stress in Veterans with schizophrenia.

They examined the effects of a web education and facilitated online support group intervention. They conducted a pre-post study with 26 families in the intervention group and 16 families in the controls. They did look at things like emergency utilization. 

They found that family distress did not change over time and was not different between groups, but that caregiver patient stress improved over time. But unfortunately, they did not have that measure in the control groups. Interestingly, there was a strong trend towards decreased admissions in the treatment group, which was surprising for such a small study.

The third intervention we will highlight here was the Caregiver’s Friend intervention. The objective of this was to improve health and stress of caregivers of patients with dementia. 

They used a tailored web education intervention based on a pre-intervention questionnaire. In other words, they tailored the education to the caregivers’ needs based on this questionnaire.

It was a fairly large randomized controlled trial of 300 patients over 30 days. They used waitlist controls. Interestingly, the average use in the intervention group was only 32 minutes over this 32-day period, but they did find improvements in self-reported caregiver self-efficacy; intention to get support; caregiver gain, stress and strain; and reductions in caregiver depression and anxiety.

Now I will switch gears to the pediatric literature. Again, we do not have time to summarize everything; and rather than give you an entire overview of the pediatric literature, I will just point you to our report. I will highlight two interventions that we thought were kind of interesting because they looked at a different type of intervention and this type of thing might be of interest to VA.

So the first was the Stockwell study from just last year and the objective of this study was to increase flu vaccine rates through weekly tailored text messaging. So intervention participants received these weekly text messages and this went on for up to five weeks. It included information that was meant to kind of de-mystify the use of vaccines. They were also personalized text messages, so they used the names of the participants in the text message. 

Both groups actually got phone call reminders, but only the intervention group got the text message reminders. It was a very large study of 7,500 patients and it was conducted in a low-income population, and vaccine rates improved in the intervention group by nearly three percentage points.

The second study we will highlight here was by Miloh in 2009 and their objective was to decrease biopsy-proven rejection in pediatric liver transplant patients. So obviously, a very specific group of patients, but not unlike some patients in the VA, transplant patients and others who have very specific and high comorbidity needs.

They conducted a pre-post study, relatively small, only 41 patients.

The intervention was to send automated text messages reminding children and then parents to take their immune suppressive medication. So the way this worked was that if the child was old enough to be kind of primarily responsible for taking their medication, they would receive the text message and then they would have to text back saying that they took the med. If the program did not hear back from the child, they would send a reminder to the parents, who then presumably would remind their child to take the medication. Biopsy-proven rejection improved over one year with the intervention.

So some general themes. As I said before, there were some broad themes that we can highlight here. One of the main ones is that peer support was the most-used and valued component of these interventions. 

Caregivers and patients cited the following benefits: that the convenience of the asynchronous communication was important; that there was an access to a greater diversity of experiences; the anonymity was important. And in one of the studies I told you about, closed groups may increase a sense of relevance and community compared to open groups.

Challenges with peer support included that sometimes message threads would go off-topic and it was not the equivalent of face-to-face support. It may not be for everyone and maybe caregivers and patients need separate forums.

Of note, none of the studies identified privacy and security as a major concern for users. Also, there is a theoretic concern that is the idea of flaming or kind of outbursts. This did not occur and perhaps this obviates the need for moderates.

Online access to experts was also important. Caregivers reported the benefits as follows: near-immediate availability for questions, and increased comfort and empowerment. Many of the adult interventions typically used email while the pediatric interventions typically used SMS and text messaging. Expert care was sometimes provided with access to Q&A databases.

Just a comment on generalizability and usage. So obviously, these interventions were only really useful for those that used the intervention; and usage was an issue. So several studies are cited here. Nearly half of those approached for one study declined to sign up for an intervention. In the Glynn study we mentioned before, attendance fell sharply when it became voluntary. 

In the pediatric literature, a cancer intervention, a minority of patient families logged on and the last citation also identifies about half the users dropped out.

Again, satisfaction was high among users, but you had to use it to be satisfied. We found a wide variety of usage frequency ranging from 20 times a month down to once a month. I mentioned that the study before, the Caregiver’s Friend where they recorded a benefit even with only 30 minutes of use over the course of a month. 

User experience has the user and their specific demographics and needs play into the utilities of the intervention. Some studies described technical barriers to intervention accessibility. There may be many reasons that barriers may be more pronounced in older caregivers, so you could imagine hearing and sight and other things being a big barrier.

Health information technologies provide an opportunity to tailor media to accommodate a diversity of users. So I just mentioned vision and hearing might be an issue. Language barriers, attention span, different learning styles. But many of these things were not broadly addressed in a lot of the interventions.

Also of note, the amount of technical training necessary for users to optimally use these interventions is unclear.

So this gets into the gaps in the literature, of which there are many, not surprising since it is a new field. Only seven studies were really designed to evaluate health outcomes and most studies in the adult literature, 15 of 22 interventions, were really in the early-development or pilot-testing phase. Few studies analyzed outcomes separately for caregiver and patient users.

Few interventions really focused on improving patient-caregiver communication. Few of the studies in this particular review had health system transactions as the focus. No studies really examined the contextual understanding of how caregivers used health information technology on a day-to-day basis, and no studies evaluated how health information technology complements existing educational and support services.

And so obviously all of these gaps become future research possibilities and help identify future directions.

One thing that we thought was important after looking at the literature is that it was really important to involve end users in the design of health information technology, in other words, doing more of what is called user-centered design. There should be more formal usability testing done when these interventions are implemented. There should be development of best practices for technology implementation.

We had said before that support groups are important to many caregivers and patients and that it might be important to provide these support groups, access to expert advice and interactive modules, and that it is important to evaluate caregiver and patient experiences. It would be useful to have more studies which enroll dyads of patients and caregivers.

Limitations of this literature in our review, one is that this literature is relatively new and the technology is changing quickly. So it is possible that a study that is only five years old becomes quickly obsolete, although we tried to minimize that by not necessarily making it the platform-focused review. 

The technologies that we reviewed were targeted at caregivers, but we acknowledge that it is possible that technologies targeted at patient populations could be adapted for caregiver use. If there was a study that looked only at patients and patient outcomes, we would not have included it in this review, so that is a limitation of which you should be aware.

The lack of a common taxonomy: though we developed a taxonomy and used it here to guide the review, there is no common, agreed-upon taxonomy and so this may have limited this search for relevant literature.

This last slide here has a link to our website and the report, if you are interested, and I will hand it over to Keith here in a second. I just wanted to give a quick acknowledgement. I did not do this at the outset, but Dr. Ed Dyer put together many of these slides and unfortunately was not able to be here today, so I just wanted to give him a quick shout out. I am going to hand it over to Keith McInnes, who will talk a little bit from the perspective of a VA researcher in this field.

Dr. Keith McInnes:Okay. Hi, this is Keith McInnes from the Bedford VA. I am a health services researcher and have recently in the last couple of years started doing some work in caregiving. My main interest up until now has been patient informatics and consumer informatics. And so I am looking at ways that informatics can enhance the experience for patients and informal caregivers and help with increased patient engagement and helping the patient kind of improve their ability to self-manage their health conditions. 

These are just a few, very brief comments that came to my mind as I was rereading the report that Devan has really nicely described to people. The first bullet, Team sport, is really just a reminder. It is a comment and a term that I often hear my colleague, Tom Houston, mentioning. It is really a reminder that in this day and age, many Internet tools really allow multiple people to use technology in support of let us say a single patient. A patient with a certain health condition may have family members and friends looking online, running Facebook groups, et cetera, that can help that patient. And I think the comments by Kathy Frisbee are just going to underscore that.

The comment about caregiver burden monitoring—I just wanted to – and let me back up just a second. My comments now are mostly focused on various caregiver issues, some of which are fairly unique to technology, but others are not really technology-focused but they could be enhanced by technology. I think this point now is an example of that. So as was mentioned, the burden on caregivers can often be quite heavy in terms of both physical and emotional stressors. We might want to think about ways to have assessments online that make it easy for caregivers to periodically kind of check in, fill out a quick online form to give them somewhat of an objective viewpoint on how they are doing in terms of their burden. 

There are a number of tools that exist. One is the Zarit Caregiver Burden. There is also quite a good scale developed by some Dutch researchers. Those could fairly easily be developed for online tools that caregivers could use.

The point about texting for three-way dialog, what I mean is that as health systems, including the VA, think about using multiple phone texting, it is pretty easy to think of ways that informal caregivers could be involved in texting. Let us say that a health system is sending out appointment reminders to patients a day or two before their appointments. I am sure it is very easy to set up for a patient to say, I would also like a copy of this text to go to my wife. And then the wife, who may be the caregiver, is also notified of appointments and can make sure the patient gets there. That is the idea about texting in three ways.

The point about caregiving and care-recipient style assessment, and this is just something I was thinking about the last few days, relates to some research I am doing now where we are interviewing pairs, a patient and a caregiver, about their experience adhering to a medication that can be quite onerous for the patient with quite a few side effects. We are starting to see, and those people who have been working in caregiving a while will of course know this, but the styles between the caregiver and the patient can often be quite contradictory. A patient may not want tons of information about his or her condition, whereas many times caregivers are actually very eager and hungry for more information about the condition.

We had an interview recently with a couple. The veteran really did not want very much information about his condition—he felt the doctor and nurse would give him what he needed—whereas the spouse was spending a lot of time online. It actually led to tension between this couple. The spouse would try to give information to the patient, to the veteran, and it actually made him quite angry. They had to work this out.

One could imagine an assessment upfront when caregivers and patients start to realize they are in this kind of situation. It will help each other understand their own styles and who would like information, who maybe does not like so much information. 

But it could be on other issues as well, for example, questions that would indicate to the caregiver whether the patient would find it helpful to be reminded about every dose of medication that they need to take, or the patient may in fact find that really much more intrusive than they would like.

I think I will end with just the last point on training. This also was mentioned briefly by Devan that there really has not been that much work done especially for older patients, older persons, about how much training is needed for them to start using tools like My Health Vet or a tablet to connect with healthcare systems. Or for that matter, their mobile phones, smartphones, that they may have just bought and they are trying to figure out. We may want to figure out what role the VA can play in providing in-person minicourses or CD ROMs, training on My Healthy Vet. Maybe it is the caregiver that need the training and not so much the patient, if it is the caregiver who is the person who is going to be using the computer in that household or in that dyad.

So I think I will just end on that point about being thoughtful about how to make sure our less technologically savvy veterans and caregivers can participate. But that is it from me. Thanks.

Kathy Frisbee:Let us see. Kathy Frisbee.

Heidi:And Kathy, you should have just gotten that popup on your screen. There we go, perfect.

Kathy Frisbee:Okay. And do you see it in full screen mode?

Heidi:It is in full screen mode, but it is only kind of in the middle of it. If you put it in the slide show, it should fill the whole thing.

Kathy Frisbee:Yeah, okay, yep. There you go. Right. We are all set.

Heidi:Perfect. Yes, just like that.

Kathy Frisbee:Okay. So yeah, so this is Kathy Frisbee and I just want to thank the Evidence-based Synthesis Program for supporting us in this and also Joe Francis for letting us know about the program. The background on this is that we were asked to develop a mobile health program for the caregiver population and we wanted to ensure that that was evaluated using a research study. Before we did that, we needed to understand what the evidence was, and Devan’s group was very helpful in helping us do that.

So today I am going to talk about mobile health in the VA; but I would be happy to spend more time on the study that is accompanying the Family Caregiver Pilot, is what we call it. If you like, just let me know, or you can ask questions or we can do a separate session on that.

So the Connected Health program is codirected by Dr. Neil Evans and myself. It came about because of a realization that there were a lot of disconnects between the electronic health technologies that we were presenting to patients. There was not much consistency through the interfaces. We were doing things differently.

So the Connected Health Office was put in place to try to align all of these technologies and to really fully utilize the capabilities through improved communication, personalization, all of the potential that it has.

The office is responsible for coordinating a lot of technologies: Mobile Health, telehealth, My Healthy Vet, Kiosks, Patient-Facing Web Applications. But today’s focus is on Mobile Health.

So there is, of course, as Devan mentioned, a huge number of people with cell phones. It is the largest computing platform in mankind’s history. Mobile Health is starting to come to age as we look at the number of clinicians that are using mobile technologies as well as the number of individuals who are looking for health information through their cell phones. 

When we think about mobile health, we often get the question, how is this different from telehealth? The model that we have is that mobile health is an engagement model, not a treatment model. The goal is to reach as many veterans as possible in health prevention, in disease management, before they move down that treatment funnel. 

And as you move down that treatment funnel, things get more costly and patients get sicker. And so currently telehealth is down towards the base of that funnel. In terms of basic case management models, it is quite costly and patients are quite sick.

What we are trying to do with mobile health is, again, reach those people who are at the lip of that funnel.

This is a diagram that tries to represent what we are doing with mobile health, and that is just connecting with patients between the times that they go to the normal office visits. So the yellow dot represents the amount of the time that a patient spends with a provider per year. The white represents all of the other time that they do not see their provider. What we are trying to with mobile health technology and many of these other technologies is connect better with patients between visits.

This slide –excuse me because I have a really terrible cold. This slide lays out what we have accomplished in the last year and a half in building out mobile health. It is our strategy. There was a lot of work that had to be done at the base. 

Look at the base: that is the infrastructure and it began really in 2011 with a mobile health pilot at the D.C. VA where the goal of that pilot was primarily to look at how we can mitigate the risk of putting mobile technologies on the VA’s network. 

Associated with that was some provider applications, which you can see at the top. The top is the Healthcare Team-Facing applications; in the middle is the Veteran-Facing; and in the bottom is the infrastructure called Central Mobile Device Management and Cloud Hosting.

Well, the first pilot had some mobile provider applications and then we were looking at recent mitigation of security. So now I am moving along the bottom and I am telling you what we have built out for infrastructure. 

We had to have mobile device management software to manage the devices that were hooking to the VA’s network. We had to have a cloud-hosting environment, so we got a place that was Terremark Cloud Hosting environment in Culpepper, Virginia. This is a FISMA high-impact certified environment, the only place where we could find to be since we had PI and FI data and we were required to have a high-impact certified facility.

We had to build out an enterprise app library so that we could catalog all of the apps. We had to go through our APO process. We have finally made the procurement of an enterprise license for mobile device management technology, which means we will be able to control all of the devices that come onto the VA’s network through this software. It allows us to push out apps. It allows us to wipe devices if they are stolen, et cetera.

And then we also created a Mobile Applications Development and Production Environment in the cloud, which is really I think probably one of the most important developments because it creates uniformity in the way we develop apps. We can have shared code, shared libraries, shared services and starter kits; and it really helps bring everybody onto the same page in terms of how we develop apps so that there is more consistency across the way things are done. 

And we are actually opening that environment up to DOD and hopefully ATF. So there is a lot of interest in working in that environment.

And then finally, we have developed a Certification and Governance process for all mobile apps to ensure that when they are published under the VA’s name, we have control over the quality of the apps. We also have style guide so the chiclets, which are the little things that you click on, on the apps, look the same across all VA applications. They can go into some detail on that later.

Then moving up to the Veteran-Facing apps, the first pilot we did was called the Family Caregiver Pilot. That is the work that Devan’s group did the research on. It involved giving 1,120 caregivers iPads with a whole suite of mobile apps that had specifically designed for them to support caregivers in the VA’s Family Caregiver Program and the veterans that they care for. And I will talk a little bit more about that.

We created a research study to evaluate the pilot. We for the first time created a Delegation Authority. So you may or may not know we struggled for years to get this ability for the VA to allow the veterans to designate someone to be their surrogate. We actually did that in conjunction with DOD. DOD has been struggling with that for ten years and have never implemented either on their end. And so they used this as an opportunity to actually implement their surrogacy function for this pilot on their end.

And then finally, we have a whole bunch of new apps that are in the works or planned, as well as a major text messaging initiative, because as everybody knows, not all of our veterans have smartphones, but the vast majority have cell phones. Text messaging has been shown to be highly effective in this management support as well as just the normal transactional things like reminding patients of their appointment. So we are writing a contract for that as well this year.

And then on the Healthcare Team side, we have a number of efforts underway. A mobile display of patient data, which is a large, $15 million contract that we let in September of last year that has a huge amount of the functionality in CPRS or complements a lot of the functionality in CPRS, but does it a little bit differently around discrete workloads for providers in some cases. It also has a lot of apps for patients in that contracts. 

We also are about to deploy in Washington, DC, our first scheduling app, which allows veterans to request appointments over the Internet. The appointment types can be videoconferencing. They can be face-to-face or telephone for primary care and mental health appointments.

Finally, we have a contract that I think is in effect now for a mobile imaging diagnostic-quality radiology images, and then a suite of nursing apps that will be let probably next month.

So the DC pilot, as I said, it was mainly for looking at the mitigation of risk on the network, but there were apps there. They were read-only apps basically displayed data to providers such as labs and meds and you could do a patient search and you could integrate your VA calendar with your calendar on your mobile device. 

It was well received by the providers and the thing was that once we gave them a little bit, they wanted more, and in particularly they wanted the write capabilities, so that is what is in this contract  that we are working on right now.

These are all the apps for providers that are in the works right now. The PatientViewer, which is basically being able to see all the viewer on electronic medical record on your mobile device; an Antibiotic Resistance app, which is really, really nice, being able to look on your mobile device and see antibiotic resistance patterns at particular facilities. It helps to prescribe antibiotics.

There is a Mobile Vista Imaging that is different from the Radiology Imaging. It lets you see all of the images in Vista Imaging on your mobile device. Surgical Pathology/Cytology app. Progress Notes, being able to actually write progress notes and not just read them.

A Would Care app: this is the concept that there is discreet workflows and that if you design a specific app around discreet workflows, you can actually make providers more efficient. So we have a Wound Care app and an Immunization app and they combine all of the tasks associated with those into a single app.

There is a Secure Messaging app for the providers and they actually improved some of the secure messaging functionality that was in My Healthy Vet on this app.

A Consult Orders Management app, which we will have by June, and that will allow patients as well as providers to see the consults that have been ordered for them. It is hoped that will help in terms of better management of consults if the patients are actually in there looking to see if they have been resolved as well as the providers.

There is a Coumadin Clinic app, which is again around the workflow of the Coumadin Clinic.

The Mobile Radiology Imaging app I talked with you about. 

Radiology Orders Management, Laboratory Orders Management, Medication Orders Management.

There is a Patient Consent app. 

There is the Health Data Reconciliation app, which is aligning with some of the work that has been done both in the Kiosks and the HI2 group. This is trying to figure out a way to take information from patients about meds, allergies and demographics and bring it all in and help the clinician reconcile that with what is in VA’s databases and then change those VA databases so that they reflect what is coming from the patient. We are hoping to expand the Medication Reconciliation to include not only if they are taking medications, but the HI2 folks are including what additional medications they are taking that we do not show in our records in VA, how they are taking them, and any side effects they are experiencing.

There is an ICU app which is around the workflow in an ICU; a Facility and Bed Locator app, which is going to connect with the bed management system and let you see what beds are available; a Safe Woman Prescribing app; and a Suite of Nursing Apps.

The Family Caregiver Pilot: I am going to talk very briefly about this. But again, if this is your main interest, I would be happy to spend more time on this. This is a suite of about ten apps that were designed specifically for family caregivers. We held focus groups with caregivers trying to understand what they needed and they have been developed with that in mind. 

We sent out 4,000 letters to individuals in the VA’s Family Caregiver Program. One thousand one hundred and twenty responded that they did want to participate in this pilot where they would be given an iPad for one year with these on them. The apps are listed here.

There is a Pain Coach. There is a Care4Caregiver app, which actually uses the Zarit Burden Inventory, the 12-question one, and based on your responses provides support back to the caregiver and also captures that data.

There is an eJournal app. This was the number two desire of the caregivers. Number one was peer-to-peer support, which we could not manage because we did not have the ability to monitor that at the time. The eJournal was the second-most requested app. It allows them to take information that they are collecting about the patients from all kinds of sources and put it into electronic form to share with the caregiver.

There is a RxRefill. A Summary of Care where they can see the data from the electronic medical record themselves.

iCal Integration, which lets them integrate their appointments, their VA appointments, into the app on the device. The Secure Messaging app for the patients and caregiver.

The PTSD Coach, which is different from the PTSD Coach that the stand-alone. It actually takes the information from your PTSD Coach, a checklist, puts it into a database and also into Vista and has a little timer on it so that you cannot take it – I think they can only take it once a month or once a quarter. I cannot remember, but it also provides the support back to the patient as well. And PTSD is the number one problem that the veterans who enroll in the Caregiver Program have.

There is a Health Advocate app. That is the app that allows the veteran to assign a Caregiver Surrogacy function.

The Notification app allows the care team to set notifications or reminders to patients as well as for veterans and family caregivers to set reminders for themselves.

There is a study planned, Quasi-Experimental study that uses the Zarit Burden score that is collected routinely by social workers who go on quarterly visits to their caregivers homes. And so we have a longitudinal database of all of these over time, and they will continue to be collected over time and we can see the change in those Zarit Burden scores as a result of this intervention.

In addition, that study will be looking at health utilization by the veterans, admissions, outpatient visits, no-show rates and ED visits.

And then is Pre-Post Longitudinal Study that looks at those individuals who receive the iPad. There is no control here. It is just a pre-post, no-control study which looks at them. 

When they first come in, we do a baseline of caregiver characteristics. Preparedness: we use a preparedness survey to determine how prepared they are for caregiving, as well as the Zarit. Again, we are replicating the Zarit on this, and we are looking at changes over time in those. Primarily, we are looking at, is there some combination of apps that seems to be most related to improvement in caregiver preparedness? And also, are there characteristics of the family caregiver and the veteran and/or the veteran that predict use of the iPad? That is another thing we are looking at in that study.

Then finally, there is a qualitative study planned at the end, which will be a telephone interview where we will try to ascertain what are the factors that drove high and low users of the intervention.

The New Patient-Facing Mobile Apps that we are planning include Texting for Health and Patient Health Inventory. We have worked with this off the Patient-Centered Care. This is being piloted this month. It collects information from patients about themselves that could be shared with providers.

There is a Caring for Women Veterans app, preconception/Prenatal app, Maternity Tracking app. There is a Veteran Health Competition app, which is our first attempt at gaming, which will allow veterans to compete on cholesterol and hypertension. 

There is a Biosurveillance Reporting app, which will allow them to report outbreaks, if they choose, and we will have their GPS activated so we can see pockets of outbreaks of different types of flu, flu-born.

And then there is a Subscription Service for Biometric Monitoring. This is where the veteran can subscribe to have information from their scales and their blood pressure cuffs, et cetera, go directly into the VA patient-generated database.

A big, big thrust for us in this has been to create this patient-generated database where the data is standardized so that it ensures consistency and uniformity across apps, but so that it will also be available to providers, so unlike My Healthy Vet right now, which is restricted. Providers cannot see it. All of this patient-generated data will be available to providers.

Now one thing we recognize is that we have a huge hurdle in terms of how we summarize this information, how we determine when it is looked at by providers so that it can become part of the clinical record, and the algorithms that support both providers and patients with this patient-generated database. And John Hickson [PH] in the HIQ Patient-Facing is looking at data as well as how to incorporate this data into the providers’ workflow.

This is an example of the Personal Health Inventory app. It is asking them about how they are feeling. There is a sliding scale that they can move their finger across. I will tell you this: the Clinic (inaud.)  the family caregiver pilot, was developed as IOS; but from that point on, we developed everything as HTML5 so it will work on desktops and across browsers and across operating systems. So that is our plan for the future.

This is an example of what we call the Launchpad. We give our contractor, Agilet [PH], a lot of credit for this. They developed this concept. All VA apps go into this Launchpad, so if you create a VA app, we will give you code and a part of this certification process is to make sure that it comes into this Launchpad. Through this Launchpad you will have single sign-on capabilities, so you sign on once and it is a nice little container, so you are not hunting all over your iPad for VA apps.

And finally, for the providers, it provides context management and resume functionality. So if you are on the provider side of this and you are in your Lab app looking at a patient and you go to your Pharmacy app, it knows what patient you were on in the Lab app and it brings you to that patient in the Pharmacy app. 

It also has resume capability, so if you stop the app midstream and you pick it up at your desktop, it resumes where you left off.

We have a whole roadmap in strategy that we have developed around this and around the security and it is clearly all about security. Everything is doubly- and triply-encrypted when the data moves in flight. We do not store data on the device at this time. However, we are working on a policy to change that. It was read-only to start.

This is our framework. Again, I think you probably do not care a lot about this, but this is a huge amount of effort that we spent building up this framework to ensure that everything we did was secure as well as its mobile applications environment. It provides common development tools for everyone, common services, a common knowledge base. You register what you are working on so everybody knows what everybody else is working on so people are not duplicating efforts. 

There are the Wiki and collaboration tools, so if I am working on a medication adherence app for HIV and you are working on one for Hep C, we can collaborate together. 

And that is the Dedicated Core Cloud at the bottom, a picture of it. When I went there, I thought, wow. This looks like a data prison, not a cloud, but that is what it looks like.

This is our certification process. We require all VA apps to go through a certification process. I would to say that it is not a Class III or a Class I process, but in fact it is a streamlined way of ensuring that all apps are scrutinized for their business, purpose and security/privacy 508, et cetera. We go through functional testing and ensure that if they are medical apps, they have clinical basis for what they are doing and we develop those. See at the bottom right-hand side it is those little chiclets. Those are our branded VA chiclets, so all of our apps look and have a VA brand to them.

And that is Neil and my contact information. So. There you go.

Heidi:Great. Thank you so much, Kathy. We do have some pending questions out here. Hopefully our presenters can stay online for a little while so we can get through those. For our audience, if you do have any questions on this session, please use the Q&A screen and GoToWebinar to submit those questions into us. The first question that we received in here: Did you happen to find out what percentage of veterans specifically have or use smartphones?

Kathy Frisbee:Yes, I do have that. My good friend, Tom Houston, just provided that to me. Forty-six percent – what percent have cell phones – do I have that? I have that in another slide somewhere. I am sorry. I cannot put up. He sent me some information on that. I do not have it. I know that 46 percent that do have cell phones use them for text messaging, 22 percent use them for the Internet, and I cannot recall what percentage have cell phones, but I can get that for you.

Heidi:Great. Thank you. The next question is one I am not sure if I understand it, but I will ask it: How does the VA system Dr. Frisbee is describing related to the mobile apps being built by the National Council for PTSD?

Kathy Frisbee:Okay. So I have to tell you I am not a doctor yet. So appreciate that, but I have not finished my PhD and so I am not that. And how do these things relate? So their goal is to develop apps in combination with DOD, which basically, at least at this time, has meant they are kind of stand-alone apps. They are not interested in really reaching the population of veterans that are receiving care from the VA at this point. They are just trying to reach any service member or veteran out there. So that is really their focus. Ours is more about those individuals who are enrolled in VA healthcare.

Heidi:That is great. Thank you. The next question here: What is the approach to multiple mobile platforms, IOS, Android, et cetera, in the mobile app development environment framework and other aspects of this work?

Kathy Frisbee:Yeah. So our strategy is to use HTML5 with a PhoneGap wrapper because we do not have enough developers to support all of the operating systems that are out there. So doing it that way will ensure that we are able to reach multiple operating systems. And it is much easier to maintain the code.

Heidi:Great, thank you. The next question: How many of these apps are developed and deployed?

Kathy Frisbee:The whole suite of Family Caregivers has been developed and they are being deployed this month. The Veteran Appointment Request app has been developed and is being deployed this month. Personal Health Inventory is developed and is being deployed this month. We have a number of them that are near completion. The Women’s Health apps are – I should be quiet about this. We have a number of other ones that are in the works. I do not know exactly where they are, but the ones I just named are actually done and being deployed this month.

Heidi:Great, thank you. Has there been any discussion of integrating these approaches to address the needs of veterans with brain injury?

Kathy Frisbee:No, not that I know of, not that I can tell you off the top of my head. I think we had someone that had contacted us about developing a mobile app for TBI and I do not know where that stands. I guess I would say to you that one of the most important things to me is that we not be the only people who are developing these, that Mobile Applications Environment is there for lots of people to use. And so I would say that there probably are people that are working on some of these things. I know I get messages all the time of things that people are developing. What is important is that they then be brought in at the end and certified so that we have consistency across all of the apps. But my goal is to have multiple people developing apps.

Heidi:Great. Thank you. The next question: Related to the usability and security studies, are VA participants involved?

Kathy Frisbee:Yes. So, yes, they are involved. We have a usability review that goes on and a user interface review that goes on. The Human Factors Office has been involved, and actually all apps are going to require this. We worked with them, the developers, in bringing these back to caregivers throughout the process to get their assessment of them, and that is available then to other developers as well for mobile apps. But in the end, you have to go through a usability and user interface checklist so that all apps are assessed for that.

Heidi:Great. Thank you. The next question: What is a PhoneGap wrapper?

Kathy Frisbee:It is a thing that makes an HTML5 app, which is a straight app that works in a web browser, look more like a native app and allows you to use some of the functionality in the phone in the app, even though it is written as an HTML5.

Heidi:Thank you. The next question is a followup to the multiple operating systems question: Does the HTML5 approach the next mobile apps to operating with a live Internet question, or can the HTML5 app still function if the mobile device is offline?

Kathy Frisbee:It pretty much does limit it to having a live connection. My understanding is the PhoneGap wrapper does allow something to happen offline, but that is a limitation.

Heidi:Thank you. The next question: Are there plans to design a plan for researcher purposes?

Kathy Frisbee:I am not sure what that means, for researcher purposes.

Heidi:I have a question concerning the clarification. If they want it, we will just move on to the next question here. How do you find these apps on the Apple App Store? Key words for search?

Kathy Frisbee:Okay, because this is a pilot, these IOS ones are a pilot, we have not put them on the Apple Store. So we are actually loading them on the devices that are being distributed to the caregivers. After an evaluation has taken place for six months and we believe that there are no problems with them, we will then post them to the iTunes store.

Heidi:Okay, thank you. The next question:What is the potential for creating apps that can be used by both VA and non-VA providers who share care of some veterans? For example, in primary care?

Kathy Frisbee:That is a good question and I do not have a good answer. For the provider apps, the question is security, right. So I mean I am thinking off the top of my head. I think that the best way that you can do that is probably doing kind of what Button [PH] does and facilitating this sharing of data between providers in a standardized  way. For an outside provider, you would have to have some sort of system that looks at how they are credentialed, what are they authorized to see, and I just do not know. That seems like a bridge too far to me.

Heidi:Okay, thank you. The next question: What sensors are commonly used on the developed phone apps?

Kathy Frisbee:What sensors? What do they mean by sensors?

Heidi:That I am not sure about.

Kathy Frisbee:That could mean biosensors ...

Dr. Devan Kansagara:I wonder if it might be sensors that would be accelerometers to see people’s change in their activity levels, maybe other sensors that take temperature or assess people’s stress levels. That is just a guess.

Kathy Frisbee:Okay. If that is the case, we are again trying to build – right now none of our apps use accelerometers on the devices, although certainly they are being used for assessing falls and different things like that. We do not have any that do that. And with respect to other biosensors like being able to plug your Fitbit and those types of things, we are building an adaptor that will allow that data to come across to VA.

Heidi:Okay. They sent in a clarification here. I mean you are using a PhoneGap wrapper, so are all sensors accessible through the wrapper?

Kathy Frisbee:Oh, I see. I believe they are. I believe that is the reason why you use the PhoneGap wrapper is so that you can access those.

Heidi:Great. Thank you. 

Kathy Frisbee:Again, I am not the technology expert.

Heidi:That is fine. The next question: Has an app been used to monitor and improve cancer symptoms and quality of life?

Kathy Frisbee:Have there been any? I believe there have been. I have come across research where people have used them for that purpose. I know that symptom reporting in cancer patients is a very big area for these. We have not done it. I know that they came across a study that looked at quality of life indicators reported in cancer patients through a mobile device, I believe, back to the providers, and the rate at which the providers looked at that information increased by like 25 percent if it was summarized and highlighted when it was out of line. So again this problem is overwhelming providers with this information and needing a way to highlight what is out of line for a provider. But yes, I know it is being done. We have not done it.

Heidi:Okay. Thank you. The next question here: Can you talk more about the Read Only policy for the apps? Can apps talk to a server for any sort of data exchange?

Kathy Frisbee:I was going to break that into the Read Only policy. So right now the policy in the VA is – I am getting mixed up on what is being asked. The Read Only policy was initially we were only allowing providers to read data. Now we are providers to write data. So there was no policy about that, it was just our initial start. So I want to say that.

Secondly, I thought you were going to ask about storing data on the device and our policy of not storing data on the device, which was again our initial position. We are now suggesting that that policy be changed, that if the data is owned by the patient, that if it is their own blood pressure that they have recorded, that they be allowed to put it on their device through the app because that is what is being done now by many apps. 

And then third, if data is coming from the VA’s electronic health record and stored on the device, the patient would be allowed to do that if they accept the risk. So that is that.

So I think I got maybe what they were asking. I am not sure.

Heidi:Great. Thank you. And that actually is the last question that we have here, so we will conclude with that question there. Do any of you have any final remarks you would like to make before we close up today? ... It does not sound like it. I really do want to thank all of our presenters for taking the time to put their sessions together and to present today. We really do appreciate the time and effort you put into this. To our audience, thank you very much for joining us for today’s spotlight on Evidence-based Synthesis Cyber Seminar. As you leave today’s session, you will be prompted with a feedback form. If you could a few moments to fill that out, we really do appreciate your feedback. We really do read it and we do take a lot of your suggestions into consideration while we are looking at these Cyber Seminars. Thank you, everyone, for joining us for today’s HSR&D Cyber Seminar and we hope to see you at a future session. Thank you.

Dr. Devan Kansagara:Thanks.

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