Transplant Recipients and Intuition as an ODL

Sara Balster, R.N., Project HealthDesign M.S.N. Student, Walden University

I joined the Project HealthDesign National Program Office (NPO) team in September to fulfill the final practicum for my M.S.N. in Nursing Informatics program. Outside of school, I serve as an IT project manager for an electronic medical record (EMR) implementation in the UW Hospital and Clinics Transplant Program. My work with the Project HealthDesign NPO introduced me to the concept of observations of daily living (ODLs). I found ODLs intriguing and decided to focus my project on discovering whether transplant recipients recognize ODLs in addition to clinical indicators such as lab results, spirometry levels and blood pressures, which they are instructed to monitor post-transplant.

The transplant recipients I interviewed said they were feeling well. When asked how they defined their health, each recipient considered his or her current activity level and what he or she could do after transplant, as opposed to the limitations he or she had experienced prior to transplant.

 “Travel has been another thing … going to places I never would have been … because what if I didn’t have a ready source of glucose or sugar, or what if I didn’t have my insulin or didn’t have refrigeration available, you know now I really have no restrictions that way. So as far as how I define my health … activities are definitely a big part of that,” said one patient.

 “So I feel very fortunate that … not only do I lead a what I consider a normal life … I’ve been able to finish school and high school when I had my first one and finish college when I had my second one, and … I was working actually when I had my third and fourth, so I feel very fortunate, you know. It really didn’t stop [my] career, it didn’t stop … a lot of things that I think would have been things that could stop people … That’s kind of what I consider normal,” said another patient.

Interestingly, recipients said they relied on intuition to determine their level of health.

For example, one recipient said: “… If you think something’s not quite right ... I was having a little chest pain and I thought ‘Well, I’m too young to have a heart attack,’ this was a few years back … so it was kind of one of those ‘I’m not feeling good, and I think I should just go in’ [moments] and it was a pulmonary embolus.”

Additionally, clinicians seem to report similar thoughts:  

“I remember one of the transplant surgeons … saying … that you know your body better than anyone else … there’s just certain things you get in tune to.”

What do you think? Is personal intuition an indicator of an ODL?  If so, how would it be documented, qualified and/or quantified?

Patient and Provider Focus Groups Influence BreathEasy Smartphone and Dashboard Application designs

Sarah Cook, BreathEasy Survey Methodologist, and Rita Sembajwe, BreathEasy Project Manager, RTI International

To gather user requirements for our smartphone application for asthma and depression/anxiety patients and clinicians, we conducted focus groups with potential users. For each of the two patient groups, we recruited participants who have comorbid asthma and depression or anxiety. Clinicians in the provider focus group were identified by Virginia Commonwealth University (VCU) staff as clinicians who treat patients with comorbid asthma and depression or anxiety.

Once discussions in the patient focus groups began, we learned a lot about our target population’s level of interest. Patients in the focus groups were very enthusiastic about using a smartphone application to track observations of daily living (ODLs) associated with asthma and depression or anxiety. In fact, patients were so excited about the idea of the application that they continued to identify and add more and more ODLs they wanted to track

We observed that these patient groups interpreted some of the questions differently than we had intended. Originally, we primarily intended to track asthma-related ODLs; depression- or anxiety-related issues were considered to be secondary. However, when asked asthma-related questions (e.g., type and amount of daily activity), patients seemed to respond in the context of their mental health statuses. Instead of reporting limited activity due to respiratory problems, patients in both groups discussed how activity may be restricted by a lack of will related to their emotional difficulties. These results require us to take another look at the focus of our application in order to find ways to adapt to patients’ interpretations or help patients adapt to our interpretations.

The clinician focus groups revealed valuable information about how collected ODLs might be used. We asked the clinician focus group to evaluate and improve upon mock-ups of the BreathEasy dashboard that would be used to view patients’ ODL data. Clinicians were very realistic about the data-entry burden that could result from this type of data, as well as how it would affect clinic workflow. They agreed, however, that having the option to select what data to view at a particular time would be useful, assuming that patients kept up with the data entry. Comments from the provider focus group gave us valuable insight into how these data would be used and which ODLs might end up being superfluous. Stay tuned to find out more about the implications these results will have on our preliminary smartphone and dashboard application designs!

Project HealthDesign Submits Comments to ONC about Future PHR Technology, Privacy and Security

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Following the Dec. 3 PHR Roundtable, hosted by the Office of the National Coordinator for Health Information Technology (ONC), Project HealthDesign submitted public comments regarding the future of personal health records (PHRs).

Project HealthDesign Director Patricia Flatley Brennan, R.N., Ph.D., commented on the inclusion of patient-generated observations of daily living (ODLs) in PHRs and highlighted the shift toward independent personal health applications (PHAs) that run on top of PHRs.

Walter Sujansky and Sam Faus of Sujansky & Associates, technical partners to the project, noted patients’ desire to assign to family, friends and clinicians customized levels of access to PHRs. They also provided information about the open-source Project HealthDesign Common Platform as evidence of this task’s feasibility.

Principal Investigators Anind Dey, Ph.D., Katherine Kim, M.P.H., M.B.A. and Gillian Hayes, Ph.D., commented on patient expectations in regard to PHR privacy, security, customization of access and ease of use.

Read Project HealthDesign comments.

Read other individuals’ and groups’ comments.

Watch videos of the ONC PHR Panel sessions (see Web Archive section).

 

HIMSS 2010 Security Survey Findings Highlight Efforts to Secure Electronic Patient Data and Comply with HIPAA Security Rule

Bob Belfort, Manatt Phelps & Phillips, LLP

Each year, the Healthcare Information and Management Systems Society (HIMSS) reports on U.S. health care providers’ efforts to secure electronic patient data. The 2010 Security Survey [pdf], which was released in November, features responses from 272 information technology and security professionals who answered questions about their organizations’ readiness to meet today’s security challenges.

Given Project HealthDesign project teams’ uncertainty about how to ensure compliance with many of the HIPAA Security Rule’s requirements when communicating with patients through mobile devices, I’d like to highlight a few findings from the HIMSS survey, which shows that many health care providers continue to struggle with Security Rule compliance:

• The HIPAA Security Rule requires covered entities to “conduct an accurate and thorough assessment of the potential risks and vulnerabilities to the confidentiality, integrity and availability of Electronic Protected Health Information held by the Covered Entity.” However, only three-quarters of all respondents reported that they have performed a risk assessment.
• Only half of respondents reported they have either a Chief Security Officer or a full-time staff member in place to handle their organization’s security function.
• At present, on a scale of one to seven, where one is not at all mature and seven is very mature, respondents rated the maturity of their security systems at an average of 4.43.
• Only slightly more than half of respondents reported that they provide information electronically stored by their organization in an electronic format to patients. Among respondents who reported that they make information available electronically to patients, the most frequently selected means of sharing this data is via a CD-ROM. Forty-three percent of respondents shared information via a web portal, while others reported sharing it through e-mails, USB thumb drives and PHRs offered by a third party.
• Mobile device encryption was one of the technologies most frequently identified for future consideration.

To me, these findings show that our project teams are not alone in struggling with how to safeguard their patients’ health information while still providing them with innovative new communication tools that facilitate better medical care. In addition, the resources necessary to develop creative security solutions may often be unavailable. And we all know that when you introduce mobile devices and other innovative ways of communicating with patients into the mix, securing patient data and complying with the HIPAA Security Rule only becomes more complicated.

As more and more mobile health care applications become available to patients, and as patients’ demands for electronic communications with physicians  grow, Project HealthDesign’s contribution to the discussion about how to ensure HIPAA compliance in this new world could not come at a more opportune time. My colleagues and I look forward to discussing this issue with you in our January webinar.

View the HIMSS 2010 Security Survey [pdf].

FitBaby on Cutting Edge of Affiliation Between University and Hospital

Dini Baker, Clinical Partner at Children’s Hospital of Orange County

The University of California, Irvine (UCI) and Children's Hospital of Orange County (CHOC) are in the midst of an affiliation process. Of course, the concept of affiliation and the actual process of affiliation are two very different things. Although the concept is fairly simple, the actualization process can be painful.

In our experience, the last areas to move toward affiliation are the research programs. FitBaby is the first collaborative project to move through the human subjects research ethics approval process since the affiliation, and we have been working out many particulars. Navigating the protection of human research subjects when the research teams are from different institutions requires additional planning and safeguards, particularly when one institution focuses more on academia and the other on clinical services. Even the Institutional Review Board (IRB) language has different interpretation. The principal investigators (PIs) and the research team from UCI and Charles Drew University (CDU) have begun jumping through additional human resource hoops. For example, health screening and background checks provide additional safeguards to ensure the team meets CHOC standards.

Despite the detailed process involved in the affiliation, each team has benefitted from the new arrangement. The greatest advantage for the CHOC team is the wonderful opportunity to share ideas and negotiate compromises as the project gets underway. For the UCI/CDU team, working with the CHOC team is a great opportunity to do research alongside individuals who focus on pediatric care. We are looking forward to our first recruitments of 2011 and to seeing whether adding this technology to the dynamic of high-risk infants will increase or decrease the caregiver burden. We also hope the FitBaby project will showcase this new affiliation between UCI and CHOC.

Research in Health Information Technology that Keeps Up with Technology

Katherine Kim and Christina Sabee, San Francisco State University, iN Touch Principal Investigators

Research in the application, adoption and practical implementation of health information technology is often conducted in the academic tradition of health services research. The social and cultural change spawned by the Internet and mobile connectivity has quickened the pace of technology development and consumer adoption. Are our research methods keeping up?

A Pew Research Center report shows that the election polls conducted this year demonstrated significant differences between landline and cell phone users’ attitudes, opinions and behaviors. These differences had not been detected in surveys completed as recently as December 2008 (The Growing Gap Between Landline and Dual Frame Election Polls). Cell phones are not new technology, but the trend to forgo a landline and rely only on cell phones is new.

If we are on the verge of seeing significant differences among technology users and non-users, then we need to ensure that we are fully leveraging these technologies to improve our research — from recruitment to implementation to evaluation. Here are some of the ways we are accomplishing this goal:

Christina Sabee recently conducted a study of consumer health communication for which she quickly recruited more than 1,000 participants via the Internet. Targeting participants through relevant health message boards and giving those participants an easy, online medium by which to respond made for a quick and large sample of interested participants. These participants responded to some of the open-ended prompts in the study with very detailed reports, which suggests that participants were willing to take time with the questionnaire because it related to their stated interest in health.

For iN Touch, we created a Facebook page that allows patients to anonymously learn about the project upon referral by a clinician. We also set up a shared Google Voice phone number with text messaging so that our participants have one central number for any issues. Because we have three research assistants who are responsible for a variety of participant interactions, from recruitment to iPod Touch support, we can now route incoming participant calls and texts to any member of the research team.

For evaluation, we will use text message surveys (accessible from an iPod Touch) to gather real-time evaluation data to supplement input from online surveys, interviews, focus groups and observations. In a later post, we’ll report how these methods stack up.

Can you think of examples of research recruitment, design, evaluation and analysis that have been improved by employing the Internet and mobile platforms?

Health Reform and Health IT: Where Are They Headed?

By Deven McGraw, Director, Health Privacy Project, Center for Democracy & Technology

The November elections are largely behind us, but speculation about what the elections could mean for the future of national health reform is mounting. A number of successful candidates promised to repeal health reform, and many pundits see health reform as vulnerable to at least some revision by the new Congress.

No one has a crystal ball, but understanding the recent history of health reform can help us put these conversations in perspective.

The Obama administration’s health reform efforts were enacted in two parts – not all in one contentious health reform bill. The first phase of health reform was passed quickly as part of the economic stimulus bill enacted in February 2009.The Health Information Technology for Economic and Clinical Health Act, enacted as part of the American Recovery and Reinvestment Act of 2009, invested $20 billion in incentives to encourage doctors and hospitals to use health IT for the electronic exchange of patient health information in order to improve individual and population health. This incentive program will begin in 2011, and preparations to implement the program began shortly after the legislation was enacted. Several critical changes to our nation’s health data privacy and security laws critical to building the public’s trust in health IT were also included.

Electronic medical records and increased sharing of electronic health information among health care providers and between providers and patients was seen as key to improving health care quality and increasing efficiency. Although there was some debate about the details of the program, support for health IT and its important role in reforming the health care system was broad and bipartisan. When then-Senators Barack Obama and John McCain were campaigning for the presidency, both expressed support for health IT as a critical component of health reform.

The second phase of health reform was the Affordable Care Act, which was enacted in March 2010. The more controversial aspects of health reform, including a mandate that individuals must purchase insurance coverage, were part of this bill. When political pundits talk about potential threats to health reform in the new Congress, they are most likely referring to provisions in the Affordable Care Act.

We do not presently know whether provisions of the Affordable Care Act, which is the second component of health reform, will be repealed or modified. Bipartisan support for health IT, however, still appears strong. Because lawmakers may still revise how the health IT money is spent or how the privacy and security provisions are to be implemented, some uncertainty remains. Even so, the whole of health care reform is not necessarily in jeopardy.