What Patients Want from their Personal Health Records

1. What Patients Want from their Personal Health Records Barbara M. Wildemuth School of Information & Library Science University of North Carolina at Chapel Hill

2. Personal health record: Definition A PHR is “an electronic, lifelong resource of health information needed by individuals to make health decisions. Individuals own and manage the information in the PHR, which comes from healthcare providers and the individual. The PHR is maintained in a secure and private environment, with the individual determining rights of access. The PHR does not replace the legal record of any provider.” (Burrington-Brown et al., 2005)

3. Do people keep health records? • 42% of adults keep some type of health record (Harris Interactive, 2004) • 58% of adults over 65 • 13% of those who keep records have electronic records • 83% of respondents believe they should have access to their medical records, though only 4% have actually tried to access them (Pyper et al., 2004) • Four modes of record-keeping (Moen & Brennan, 2005): • just-in-time • just-at-hand • just-in-case • just-because

4. PHR use: Current status • As of 2003, about 250,000 Americans have access to a PHR (Markle Foundation) • 79% of patients “think it is a good idea to make health records electronic” (Pyper et al., 2004) • 42% of people keep medical records in some form; of those who don’t, 84% believe that they should (Harris Interactive, 2004) • 36% of patients would like to be able to add information to their medical records (Pyper et al., 2004)

5. PHRs: Current applications

6. Large-scale studies of PHR use • Cimino et al. (2000): PatCIS used by patients to view test results • Hassol et al. (2004): 1/3 of patients reported gaps in the record; 1/4 reported inaccuracies • Wang et al. (2004): System used primarily for communication between patients and care providers • Denton (2001): 37% were still using PHR 10 months after receiving it • Ertmer & Ückert (2005): After using a free PHR, 71% said they would not pay for it

7. Patient perceptions of PHRs • Benefits of PHRs: • Can better participate in health maintenance (Ross et al., 2005; Harris Interactive, 2004; Markle Foundation, 2005) • Support better communication between patient and provider (Tang et al., 2005; Harris Interactive, 2004) • Would improve patients’ understanding of medical conditions and physician’s instructions (Ross et al., 2005) • Concerns about PHRs: • Privacy and security (Pyper et al., 2004; Harris Interactive, 2004) • Inaccuracy and incompleteness of records (Harris Interactive, 2004; Markle Foundation, 2005)

8. Research questions • How do people maintain their personal health records now? • What are the purposes for which people might create and maintain electronic PHRs? • What types of data do people want to keep in an electronic PHR? • In what ways do people want to interact with their PHRs? • What concerns do people have about electronic PHRs?

9. Study participants • Parents with young children (n=11) • Amy, Cary, David & Bree, Edouard, Elinor, Ellie, Helen, Kevin, Marge, Monica*, Tony • Adults with chronic illnesses (n=13) • Becky, Jane, Joyce, Kail, Marie, Matt, Megan, Melissa, Mike, Samantha, Sharon, Sonia, Tim • Adults caring for older parents (n=9) • Cathy, Evelyn, Judy, Kim, Margaret, Monica*, Nadia, Sandy, Sharie • Older adults (n=11) • Bel, Deb, Geneva, Herman, Isaac, Jack, Martha, Max, Peter, Philip, Victor & Sarah

10. Semi-structured interviews • Ways that current records are kept • How/where PHRs are and should be stored • What information a PHR should contain • PHRs for family members • Who should have access to the PHR • Ways that records can be searched and sorted

11. Results related to current records • Current status of participants’ records • How they’re organized • What they contain • How they’re used

12. People keep some records • Calendar, planner, diary • I do have a planner and I'll mark down if I have a doctor appointment. So if I really wanted to see when my last appointment was, I could look back and see because I have my planners from the last few years. -- Elinor • File folders • How I have it is a folder of medical receipts for each year that I keep to add up for taxes. – Amy • Lists or notes • I just keep a notepad, an 8 by 10 notepad for short-run tracking of an illness. – Kail • Spreadsheet • My wife gets physical therapy for carpal tunnel, and we have a spreadsheet that keeps track of when, with whom, how much we paid, how much we paid up front, how much the insurance covers. -- Tim

13. Records are often organized by date • Filed by date • They are in my filer folders in a cabinet... probably chronologically. -- Geneva • Otherwise, may be organized by disease or test results, by doctor, or by person (member of family)

14. Types of information people keep • Receipts, bills, insurance forms • It’s a looseleaf book and it's our life, it's our tax life. I'm a painter, so there's a section for art. There is one for insurance, one for medical, one for contributions. In addition to that, there are physical billings, receipts, and thank you’s. Then we have a book that's divided up into medical, prescriptions, art, travel, etc. -- Jack • Information about medications • I keep records for my son, because he was born premature, 27 weeks. He had a very rough start, and I have to keep track of his medications. I just jot down what medications were changed, who changed them, etc. -- Ellie • Lab or test results • If there was a test done, then I was given the results, and those will be in the folder. -- Bel

15. How the records are used • To resolve insurance claims • Sometimes, when we have to pay the bills or when the EOB type things make no sense, we put them together and try to figure out what’s going on. -- Isaac • For tax purposes • How I have it is a folder of medical receipts for each year that I keep to add up for taxes. -- Amy • When seeing a doctor • I have several illnesses, cancer, heart attack. I tend to collect information by illness… I have an active folder that has to do with the current illness. And it is located conveniently by the door. When I go to see a doctor and when I want to get some information, I can grab it very easily. -- Philip • When changing doctors • I rarely see doctors… If I go to another doctor, I can bring along the results of my physical I had when I was 40 so they can chart it as I go along. -- Cathy

16. Results related to the ideal PHR • Purposes for maintaining a PHR • What it will contain • How the contents will be sorted/filtered • Who can read it • Who can write on it • Form of PHR; how and where it will be stored

17. Purpose: Summarize medical history • A particular illness and its treatment • Reports on the history of an illness and all the treatments and medications and what did or didn’t work, from the initial diagnosis to the cure or other end. My mother got diagnosed with rheumatoid arthritis and she saw so many doctors and was on so many drugs that it seemed no one could figure out what the right thing to do was. -- Marie • Medications • Reports on, you know, medication trends. You know, if I took something before or if I start to enter something again that I haven’t done before, if it said ,“Hey, this is new, would you like to keep track of such-and-such?” Side-effects, that would be great, if it popped up and said, “You’re currently taking such-and-such, are you having any side-effects?” Because I forget to put those in. -- Megan

18. Purpose: Analyze trends • Changes in symptoms over time • Especially for ongoing issues, to try to figure out what had been done. If I had a log of when I'd been feeling bad and how often it was, trying to figure out whether or not things had changed. Because for long term issues, I don't keep a log, but then I always wish that I had because it's actually really hard to tell sometimes if I'm getting better or worse. -- Tim • Tracking health indicators or test results • I think for my own self, it would be cool to plot out from a ten year period or whatever, things like cholesterol level, the IDL and HDLs. And blood pressure. The kind of things that matter. -- Evelyn

19. Purpose: Communicate with doctor • To aid in communication • The main thing is to use it as a way of interacting with the doctor so we both keep track of what's happening. That's the no. 1 purpose I see for it. – Kevin • To check record before doctor visit • I would look at it just before a scheduled appointment, so I would know what I was talking about when I went to see the doctor, so I could be more educated when I walked into the room. – Cary • To record what happened during doctor visit • Every time I saw Dr. Smith, what date I've seen him, what we discussed, what medication did he change, anything like that… I would see the patterns of how I see him. -- Geneva

20. Purpose: Handle an emergency • When injured • Even if you are in a car accident locally, and you are unconscious ,it would be good to be able to plug in to something that would see drug interactions or your past history. I can see security problems with it , but it would be nice. -- Nadia • When traveling • One thing that crosses my mind is that... I want to know about international aspects of this. The records could be accessed by a physician in Belgium? That would be.. if I have a heart attack in Belgium, could the physical get my records, previous heart tracing and this kind of stuff? That would be useful. --Edouard

21. Content related to treatment • Doctor visits • I’d like to keep a record of each doctor visit, and the reason why. -- Kevin • Medications • My son has asthma and he takes his medicine everyday. We just changed his medicine. He's done so well that we actually stepped back a little bit on his medicine. That would be an important thing if I were to keep better records to know exactly when he stepped back so if there is a change we can look back and know when that occurred. -- Cary • Lab test results • It would be interesting to me to have access to my lab work, so I can compare the labs and see if there is any correlation between a period when I'm feeling bad and what my labs were looking like then, compared to when I'm feeling better. --Samantha • Immunizations • I really want to put in immunizations because I see that as a real problem now. We live longer so we really need to be re-immunized. I travel to foreign countries. So that's really the thing I want to keep the abreast of. --Martha

22. Content related to health status • Family history, including genetic history • I'm interested in genealogy and family history. And my father died two years ago. Before that I was communicating with him about family history. I want to know how my grandparents died and what causes might be important for just my own medical history. -- Edouard • Diet and exercise • I suppose if I were on some regimen of exercise, it could be a way of keeping track of which exercises to do. I’ve done some weightlifting and it's good to vary the exercises you're doing. So perhaps a system like this could give you a reminder of what you need to do each day, sort of keep track of the rotation of things. -- Kevin • Lab test results • I think it probably would be helpful to look at things like blood pressure over time. That’s not really a lab test, but it’s more a maintenance-y kind of measure. -- Jane

23. Sorting the records in the PHR • By date • I would want to sort it by date, so I would be able to see a period of time. -- Joyce • By illness/condition • There was a time that I had headaches. I went to a series of different doctors. I found it is caused by my eye lids -- I had a droopy eye lids… So I want to be able to sort by illness. -- Max • By test • Maybe have lab reports in a folder, maybe even not chronologically, just what they are. Here is the lab results. Here is results for all the physical exams. Here is the result of my cholesterol. --Evelyn • By doctor • Certainly chronologically. Certainly by clinic, by physician. --Max

24. Filtering the records in the PHR • By date/time/season • Ican see a date filter. Although I've been tracking my thyroid for three years, at some point I'll only care about the most recent two years. -- Monica • By illness/condition • It would make sense to link the records by illness or by issue, whatever that might be. For example, when my son had pneumonia, if I could somehow link all those visits and prescriptions for that one illness, I could just view that. --Kevin • By doctor or type of doctor • You could do it based on, for the hospital, all the hospital records, or all his eye doctor records, or all of his cardiologist records... All of his physical therapy things. -- Tony

25. Issues related to PHR access • Those providing care should have access • If I was under the care of a doctor for a particular illness, I would say OK, you can look at everything. Because who knows what might affect it, contribute to it or might be affected by it. –Judy • I mean, I feel like, you know, in my opinion, full, unrestricted access for physicians. I think physicians could do their job better if they had more information at their disposal. --Mike • Patient should have fine-grained control • The best thing would be if the user could control who had access. --Kevin • I would like to be able to pick out what fields that I would like to include there. What things I believe he really doesn't have to know. It is nice to have the control rather than turn over the whole database. -- Evelyn

26. Sharing the PHR across care providers • Benefits • I have several physicians… I would like there to be some easy exchange among them. --Martha • I guess the situation I see as most problematic is when you shift from one physician to another for whatever reason. You know, getting those answers transported takes a lot of time, can be cumbersome… And a lot of times I felt like I was sort of made responsible for making sure that Specialist A knew what Specialist B had done. --Mike • Concerns • Q: What if the record included things that happened outside of the Duke system? G: I don’t know why that doesn’t sound quite right to me. I suppose because it's giving up a whole lot of autonomy to a doctor, that this way I have a choice to do other things outside that system… If I wanted to do something more alternative, which is what the acupuncture is, I would like to feel that I’m doing that without anybody saying, “No, you can’t ,”or “You shouldn’t”. --Geneva

27. Sharing the PHR with family members • Need to share when in caretaker role • I'm kind of, I wouldn't say the care taker, but I'm one of the people who helps take care of my grandfather. He's 80 years old. He has a lot of health problems… It's also important to have duplication of different people knowing, because you never know who will be available to say, “This is what's wrong with my grandfather”. --Sandy • Just being able to keep track of my own health history and that of my children… just being able to keep track ,so I know what I'm talking about when I go see a doctor. --Elinor • Privacy concerns • The only reason that I would want access to a family member's information is when there is some ongoing health problem that I was involved in their care with. Other than that, no. I don't think that's any of my business. --Bel

28. Adding/editing data in the PHR • Patient • Personal notes • Corrections to physician notes (added) • Less important information (e.g., diet, exercise) • Physician • Anything that would go into the medical record • Pharmacist • Add medication information only; not even see other information • Provide supplementary information about side effects and contra-indications • Family members • Very few responses; mixed opinions

29. PHR location/control (1 of 3) • Personal physician • I would be a little more concerned about security in the doctor's office, because if someone were truly looking for health info, I suspect they would go there instead of to an individual. And I would want my doctor to have backups. --Cary • I’m not sure I want somebody else to be able to read my records. And I don’t know how good my physician’s protective system might or might not be. In fact at the moment – this is completely an aside – I barely have a physician. My physician disappeared! --Isaac • Insurance company • Insurance companies make too many decisions based on what they think, not what your doctor feels is proper for you… I don't think that they have any business in your medical records. –Deb • I have to say I don’t trust insurance companies all that much… They are not out there to help anybody, really. They’re out there to make money. That’s not the attitude I would like a person who has access to all my health records to have. --Geneva

30. PHR location/control (2 of 3) • Home computer • Keeping my records on my home computer would be fine. But again, I don't think we would update it, and we might not back it up. I think it would be easily lost. Now, the home computer systems change so frequently, it would become obsolete. It is very easy to lose records. --David and Bree • I have mine at home. I just had a women that I work with, her son’s apartment was just burglarized and the thieves took their computer stuff. That would concern me. --Joyce • Portable/mobile device • Computers are not perfect – they can be hacked. If people wanted to keep them perfectly safe, they could download data onto a CD, and only the template would be on the computer and you'd back the data up to something else. That's one way of keeping it off a computer that could get stolen, or could be hacked or whatever. --Helen • I would like it to be on a CD or on something, not just sitting on my computer. I am afraid it would get erased. --Martha

31. PHR location/control (3 of 3) • Government agency • I think people are getting skeptical about the government having too much information about us. There are checks and balances, but no. --Cathy • Incidentally, I'm not at all an anti-government person. I would like my taxes to be raised, believe it or not. I think there are lots of things to be done by the government… But health records, no. --Herman • Third party • If it was a program like Quicken, where you could enter your stuff.... I guess the company has your tax info and then it is sent to the government because they get to have it too. And then you also have it on your computer. So it's kind of shared in three places... Something like that could work. --Amy • Q: Would you be willing to have your records on an online website? P: No, no, no. Who would own that site and who would have access to it? --Philip

32. Summary of initial findings • How do people maintain their personal health records now? • They keep receipts, bills, and insurance forms, information about their medications, copies of lab test results, records of appointments • In calendars and diaries, file folders, lists or notes, and spreadsheets of information • Usually organized by date • They use the records to resolve insurance claims, for tax purposes, when seeing their doctor, and when changing doctors

33. Summary of initial findings • What are the purposes for which people might create and maintain electronic PHRs? • To summarize their medical history, including: • To analyze trends • To communication with their doctor • To handle an emergency

34. Summary of initial findings • What types of data do people want to keep in an electronic PHR? • Information related to the treatment of particular illnesses or conditions • General information related to their health status

35. Summary of initial findings • In what ways do people want to interact with their PHRs? • View online and get reports • Sort the records • Filter the records

36. Summary of initial findings • What concerns do people have about electronic PHRs? • Who controls access to the records, for viewing • Who controls access to the records, for adding/editing • Where will the record be maintained

37. Implications • Issues in interface design • Issues in access control

38. Acknowledgements • Co-investigators • Catherine L. Blake, Kristina Spurgin, Sanghee Oh, & Yan Zhang • Funding provided by the National Cancer Institute • Supplemental grant PI: Gary Marchionini • Primary grant PI: Barbara Rimer

39. References • Burrington-Brown J, Fishel J, Fox L, Friedman B, Giannangelo K, Jacobs E, et al. (2005). Defining the personal health record. AHIMA releases definition, attributes of consumer health record. Journal of the American Health Information Management Association, 76, 24-25. • Cimino JJ, Li JH, Mendonca EA, Sengupta S, Patel VL, & Kushniruk AW. (2000). An evaluation of patient access to their electronic medical records via the World Wide Web. Proceedings of the AMIA Symposium, 151-155. • Denton RC. (2001). Will patients use electronic personal health records? Responses from a real-life experience. Journal of Healthcare Information Management, 15, 251-259. • Ertmer A, & Ückert F. (2005). User acceptance of and satisfaction with a personal electronic health record. In Engelbrecht, R. et al. (eds.), Connecting Medical Informatics and Bio-Informatics. IOS Press, 861-866. • Harris Interactive. (2004). Two in five adults keep personal of family health records and almost everybody thinks this is a good idea: Electronic health records likely to grow rapidly. Health Care News, 4(13), 1-5. Last accessed online September 2008: http://www.harrisinteractive.com/news/newsletters/healthnews/HI_HealthCareNews2004Vol4_Iss13.pdf. • Hassol A, Walker JM, Kidder D, Rokita K, Young D, Pierdon S, et al. (2004). Patient experiences and attitudes about access to a patient electronic health care record and linked web messaging. Journal of the American Medical Informatics Association, 11(6), 505-513. • Markle Foundation, Personal Health Working Group. (2003). Connecting for health: A public-private collaborative. Final report. Retrieved September 2008 from http://www.connectingforhealth.org/resources/final_phwg_report1.pdf. • Moen A, & Brennan PF. (2005). Health@Home: The work of health information management in the household (HIMH): Implications for consumer health informatics (CHI) innovations. Journal of the American Medical Informatics Association, 12(6), 648-656. • Pyper C, Amery J, Watson M, & Crook C. (2004, Nov) Access to electronic health records in primary care: A survey of patients' views. Medical Science Monitor, 10(11), SR17-SR22. • Ross SE, Todd J, Moore L, Beaty BL, Wittevrongel1 L, & Lin C-T. (2005). Expectations of patients and physicians regarding patient-accessible medical records. Journal of Medical Internet Research, 7(2), e13. • Tang PC, Ash JS, Bates DW, Overhage JM, & Sands DZ. (2005). Personal health records: Definition, benefits, and strategies for overcoming barriers to adoption. Journal of the American Medical Informatics Association, 13(2), 121-126. • Wang MS, Lau C, Matsen FA, & Kim Y. (2004). Personal Health Information Management System and its application in referral management. IEEE Transactions on Information Technology in Biomedicine, 8(3), 287-297.