Here in the USA — and in some other countries too — there is an ongoing debate about whether patients should have broad access to their personal health records (including things like laboratory results, physician notes, etc.).
In a small study by Pai et al., published in Current Oncology, the authors conducted a pilot exploration of whether greater access to personal health records could support patient needs for health information, care, and decision-making in a group of Canadian men with prostate cancer.
The study enrolled 22 men whose care was being managed through the British Columbia Cancer Agency. For a period of 6 months, these men were able to access their medical records and a set of relevant support tools through a secure Web-based health record system called “Provider”. “Provider” site activity was monitored to assess usage patterns, and at the end of the 6-month period, the men were asked to provide feedback on the experience.
Here are the key results of the study, as reported by Pai et al.:
- 17/22 patients completed the study
- Of the 17 men who completed the study, five (29 percent) had minor difficulties using “Provider”.
- The most accessed medical records were laboratory results and transcribed physician notes.
- 16/17 respondents (94 percent) were satisfied with the access to their medical records.
- 11/17 respondents (65 percent) stated that “Provider” helped to answer their questions.
- 13/17 respondents (77 percent) indicated that the privacy and confidentiality of their personal health information had been appropriately preserved.
- 11/17 respondents (65 percent) reported that using “Provider” had helped them to better communicate with their doctors.
- 14/17 respondents (83 percent) had received new and useful information through “Provider” that they would not have received by talking to their healthcare professional team.
- 15/17 respondents (88 percent) stated that they would continue to use “Provider”.
This would seem to offer a reasonably “ringing” endorsement of the value many patients could gain from having access to their medical records through some form of on-line personal health information system.
There is a subset of the professional community that is less than enamored by this idea, however. Among other things, they argue that patients shouldn’t be able to get access to new laboratory data until it has been reviewed by their doctors (because such data are easily misinterpreted) and they are concerned about patients being able to have access to physicians’ medical notes because they believe that this will lead physicians to be less straightforward in keeping such notes. (How would you react to a note that said “Pt angry/combative” in your medical record? And no, we have never seen that in a medical record, but we’re pretty sure it could be found.)
Pai et al. conclude that,
Our results support the notion that [personal health records] can provide cancer patients with timely access to their medical records and health information, and can assist in communication with health care providers, in knowledge generation, and in patient empowerment.
The “New” Prostate Cancer InfoLink agrees with that conclusion, but we also understand that there are issues that need to get resolved before we could all reasonably expect to be able to gain access to such systems.
Filed under: Living with Prostate Cancer, Management, Uncategorized | Tagged: access, health, information, personal, record |
THE "NEW" PROSTATE CANCER INFOLINK 
All patients being treated in the GU Cancer Center at MD Anderson have access to personal health records through myMDAnderson.org. All lab results, scan and imaging results, as well as physician notes and procedure notes are available. Since I live a long distance from MD Anderson, I can use the information to work with my local urologist. It is a great system and I see no downside to having access to your own medical records.
This post gets more interesting as you read through it. Of nine bullet points this reaction applies to #7 — almost two-thirds of those who filled out the survey felt they learnt something valuable about talking to doctors. I cudda used that 10 years ago!!! As to #8 — five out of six respondents imply that their medics had been economical with the “truth”. And #9 — hardly surprising.
I will be frank, I object to “experts” hiding stuff that “is” me from me. I complain quite often about the lack of information, missing test results, and such like. On the other hand, I just wallow in the luxury of putting a professional on the spot trying to explain to me exactly what re-staging was implied when “they” found nodal involvement (2004) to add on to a T2a tumor.
It would not surprise me one bit to discover “Pt angry/…” in “my”(?) notes! One could hardly be more angry with the doctors, etc., than one is with one’s own prostate gland!
“[T]here are issues …”, you say, around this. Which is not cricket. You are not communicating!
Some places are further along this “curve” than others!
Here in Florida Patients have a legal right to obtain copies of medical records. Physicians may charge a nominal fee which is determined by law. Any physician who refuses to comply with the law is subject to discipline by the state Board of Medicine.
A couple of years ago, I had the privilege of visiting a state legislator on behalf of a professional group. She was opposed to a proposal that the state establish a database for certain groups of patients. Her reason was that her personal health information at a university medical center had been hacked, along with that of many others.
Personally, I had no trouble obtaining printed copies of records from my treating physicians. All things considered, it seems our information is more secure locked in a cabinet than stored on a remote server. It may be less convenient for us patients to get. But I don’t think we can expect true confidentiality if the records are accessible on line.
Some physician notes are surely a private matter and patient access to these seems ill-advised. Lab results reasonably are the property of the customer/patient. Presumably there are routine reports, as of office visits, which are part of the information which also should be accessible to patients. These may now include annotations by the physician some of which s/he will prefer to keep private.
The health center where my PCP works has a secure website where I can view my medical records and correspond with my PCP via email, but I’m not able to view physician notes. It’s a great system!
When I asked my PCP to take over prescribing drugs for ED so that I would no longer have to get the prescriptions through the office of the surgeon who performed my prostatectomy, my PCP entered a diagnosis of ED into my medical record. When I reviewed that record, I saw that the diagnosis was under the general category of “pyscho-sexual disorder.” I contacted my PCP and told him that I didn’t want my diagnosis classified as psychological when it was clearly a physical problem. He told me that he couldn’t see the general classification at his end and that “there must be something wrong with ICD-9 code.” I then did research on the web and found that there are indeed two ICD-9 codes for ED: one that falls into the category of psycho-sexual and one that falls into the category of “organic.” I gave him the “organic” code, he changed my medical record, and now it shows my ED as “organic.”
How’s that for being your own advocate in the health care system?
Doug
Good job Doug!
Our medical foundation uses the EPIC System, which currently provides patients a wide variety of tools, including viewing of lab results but not physician notes. One may PM the physician/team for further information about a lab result or any nonemergency medical issue; however, one’s PCP must review and release all lab results in order for the patient to view them. If the doctor is out of the office for a few days or longer this can measurably delay one’s viewing of a particular test result. Additionally, some providers are considerably more conscientious than others in this review and release process.
Dear Chedley:
(1) I discussed two of the “issues” in the last paragraph but one. There are literally hundreds of legal, ethical, moral, administrative, and technical issues related to the functioning of such systems. Remember that they don’t just have to work for men with prostate cancer. They would also be available to people with profound but undiagnosed mental problems, or potentially to someone who was the guardian of a child a doctor had been told he was abusing.
(2) It is a perfectly reasonable finding that a patient be initially diagnosed with T2a disease but to be found to have nodal involvement at the time of radical prostatectomy. “Wallowing in the luxury of putting a professional on the spot” doesn’t seem like a particularly helpful response to such a situation. Nobody’s going to be getting a “gold star” when something like that occurs. Some things just happen.
Uppsala County in Sweden now has an on-line system. I can view an aggregation of my “journals” from all divisions of the Swedish health care system I have ever used. Next week I shall ask for these electronic data sets to be destroyed. I have several reasons.
First, I can get paper copies at any time right now. Why have all this on line? Included are some unintentional errors I wish to correct; I was planning on doing this anyway.
Second, I simply do not trust the Swedish government — on county or national levels — to keep these records secret, either from other individuals or from the private insurers that I believe will infect the EU shortly after the Transatlantic Trade and Investment Partnership, (TTIP, a.k.a. the EU US Free Trade Agreement) comes into effect (planned for about 2015, with rumours of full privatisation by 2020). The NHS was in a sense privatised by a Blitz, last February; the Dutch system on January 1, 2006. There are excellent reasons not to trust this, e.g., the use by private insurers of old records to determine treatments in individual cases. Something similar is now under discussion in the UK.
Third, this is austerity Europe, and one must be alert for fascist, neo-Nazi, and ultra-nationalist movements that might seize power in some countries in the future. My Dutch partner’s family was largely murdered at Auschwitz, on October 4, 1942 or 43. The Nazis and collaborationist Dutch policemen used records stored at the “Population Registry” in Amsterdam, to round up almost all Dutch Jews, very quickly, e.g., on the night of 2 October 1942 or 43. My partner, her Revolutionist Resistance mum, and her uncle escaped after arrest. How can anyone know that something similar won’t happen again, using medical records to arrest the “lebensunwertes Leben” (“life unworthy of living”, in German)? I won’t risk this, and neither will others whom I know, spread throughout the EU. If this seems highly improbable or paranoid, please watch this video. I lived about 0.5 km from this spot. Of course, copies might well be preserved in secret, by the authorities, but this is a matter of survival and principle.
Kaiser Permanente patients have had access to their records for at least 5 years. We can look up our own labs, e-mail our doctors, schedule appointments and access a huge health education site. When I read this article I said “Really? welcome to the digital age”. Certain labs including PSA results are not posted for 48 hours so the doctor can see the result first and phone or e-mail the patient if there is sensitive data that might need an interpretation. Routine labs like lipids, CBC, etc., are instantly put on-line. We can even graph lab results over time. It is a great system and involves several million patients nationwide.
Bob:
As I said to Allen earlier, some organizations are further along this curve than others. One of the advantages of being a Kaiser patient is that Kaiser employs most of its own physicians, so it has a good deal of direct input into what they need to do and when they need to do it. Of course it has a similar degree of control over what you can actually get covered if you are that patient. I believe, for example, that Kaiser is no longer (usually) covering the costs of proton beam radiation therapy.
You are correct. I did not mention that I was a retired Kaiser Permanente physician (a pediatrician). It has been interesting going from a provider of care to a patient. In my 42 years, I never felt I was controlled or told how to practice. You are correct that there are limits put on coverage for expensive therapies if they are not proven to be better than what is available for less cost. Proton beam would be a great example of this. Every therapy is subjected to a cost-benefit analysis and value must be demonstrated. Evidence-based medicine is the catch-word now.
Dear Sitemaster:
1. This is not beyond the wit (skill) of humans to sort out. As to prostate cancer and all my blood tests, it’s quite easy to dig up info. Having pre-existing CFS/ME (US = CFIDS?), which in the UK is classified as psychiatric rather than neurological, these records are a different can of worms.
Fact is, I get more “dodgy” thoughts in that awful Lupron-brain condition than I ever had with CFS alone. Which was none. At least with prostate cancer, telling a carer about such side effects doesn’t have her/him reaching for the suicide-risk questionnaire, like yesterday or at least at the speed of light. (I put my “loopy” side effects into a written report.)
2. Yes, but being stroppy in 2004 means I got upstaged without losing my prostate. My gold star is optimising my quality of life and its quantity. And, sorry, I momentarily forgot, the Brits’ SOH doesn’t cross the Pond, let alone CA.
3. Seriously the breakdown is two-way. In a “previous life” I wielded the authority to dish out gold stars, I know the game. I never saw one, or heard of one, or heard a doctor (except a pediatrician) mention one. I think my doctors deserve one for rescuing me from unnecessary surgery. My point was, they thought one thing and I differed. Had I not prevailed, I would have been inappropriately treated, over-treated.
I came here to look at how “support” works in USA. Enough.
Thanks and bye
The Mayo Clinic provides complete access to patients including physician’s notes. Excellent system.
I believe it is important for patients to review the doctor’s notes to ensure that both sides communicated correctly and are on the same page.
“Pt angry/combative” … I would rather know the truth than waste time. If that is a medical fact then it needs to be addressed. And why is it not? If not a medical fact, then why waste everyone’s time, money and health?