Public Q&A: How should a clinician measure patients’ use of online health resources?

Here’s a question I received recently from a clinician I met at a conference. He had expressed interest in the Pew Research Center’s health and technology surveys and was now following up:

We are in the process of revising our patient forms and this may be a good time to add 1-2 questions that might best assess e-health utilization for the purposes of future data retrieval. Can you share examples of the questions I can use?

My reply is below, shared in the spirit of public Q&A so other people can contribute and we can learn together.

Our most recent health survey questionnaire is available on our site, along with the topline data so you can see how the national sample answered the questions:

September 2012 health survey data

Some useful questions include:

Q8      Still thinking about the LAST time you went online to look for health information… How did you begin looking? Did you start… [READ 1-4 IN ORDER]

Based on online health seekers [N=1,741]

%	77	At a search engine such as Google, Bing or Yahoo
	13	At a site that specializes in health information, like WebMD
	2	At a more general site like Wikipedia, that contains information on all kinds of topics, OR
	1	At a social network site like Facebook?
	3	(VOL.) Other (SPECIFY)
	2	(VOL.) Don’t know
	2	(VOL.) Refused

(Note: this trend hasn’t shifted in a decade, but I wonder if it would be different for your patient population?)

Q12     Have you ever gone online specifically to try to figure out what medical condition you or someone else might have?

Based on online health seekers [N=1,741]

%	59	Yes
	40	No
	*	Don’t know
	*	Refused

(Note: 59% of online health seekers translates to 35% of U.S. adults)

Another line of questions which might be useful to you:

Q24     Now thinking about your health overall… Do you currently keep track of your own weight, diet, or exercise routine, or is this not something you currently do?

%	60	Yes, keep track
	39	No, not something R currently does
	*	Don’t know
	*	Refused

Q25     How about any other health indicators or symptoms? Do you happen to track your own blood pressure, blood sugar, sleep patterns, headaches, or any other indicator?

%	33	Yes
	67	No
	*	Don’t know
	*	Refused

CARE10 Turning again to the UNPAID care you provide to family, friends or others… Do you happen to keep track of any health indicators or symptoms for any of the people you care for?

Based on all caregivers [N=1,171]

%	31	Yes
	69	No
	*	Don’t know
	*	Refused

Q26     Thinking about the health indicator you pay the MOST attention to, either for yourself or someone else, how do you keep track of changes? Do you use… [READ 1-6]

Based on those who track a health indicator for themselves or others [N=2,183]

%	34	Paper, like a notebook or journal
	5	A computer program, like a spreadsheet
	1	A website or other online tool
	7	An app or other tool on your phone or mobile device
	8	A medical device, like a glucose meter
	49	Or do you keep track just in your head?
	2	(VOL.) Other (SPECIFY)
	2	(VOL.) Don’t know
	1	(VOL.) Refused

Note: Total may exceed 100% due to multiple responses.

(Note: the series goes into more detail about frequency, with whom they share the data, impact of tracking…)

The questionnaire available online is only our English-language version. Below are the same questions in Spanish (the notes to interviewers are still in English):

ASK ALL ONLINE HEALTH SEEKERS (Yes (1) to any item Q6a-l):

Q8      Siga pensando en la ÚLTIMA vez que buscó información de salud en línea. ¿Cómo comenzó a buscar? ¿Comenzó… [READ 1-4 IN ORDER] {modified PIAL June 2001}

1        En un motor de búsqueda como Google, Bing o Yahoo

2        En un sitio que se especializa en información de salud, como WebMD

3        En un sitio más general como Wikipedia, que contiene información sobre toda clase de temas, O

4        En una red social como Facebook?

5        (DO NOT READ) Otro (ESPECIFIQUE)

8        (DO NOT READ) No sabe

9        (DO NOT READ) Se negó a contestar

ASK ALL ONLINE HEALTH SEEKERS (Yes (1) to any item Q6a-l):

Q12    ¿Se ha conectado específicamente para intentar determinar qué condición médica podría tener usted o alguien más? {new}

1        Sí

2        No

8        (DO NOT READ) No sabe

9        (DO NOT READ) Se negó a contestar

ASK ALL:

Q24    Ahora piense en su salud en general. ¿Actualmente hace un seguimiento de su propio peso, dieta o rutina de ejercicios, o no es algo que haga actualmente? {modified from Sept 2010 Q24-item E}

1        Sí, hace un seguimiento

2        No, no es algo que el encuestado haga actualmente

8        (DO NOT READ) No sabe

9        (DO NOT READ) Se negó a contestar

ASK ALL:

Q25    ¿Qué sucede con otros indicadores o síntomas de salud? ¿Hace un seguimiento de su propia presión sanguínea, azúcar en sangre, patrones de sueño, dolores de cabeza o algún otro indicador? {modified from Sept 2010 Q24-item F}

1        Sí

2        No

8        (DO NOT READ) No sabe

9        (DO NOT READ) Se negó a contestar

ASK ALL CAREGIVERS (CARE2=1 OR CARE6=1):

CARE10  Retomemos el tema del cuidado SIN PAGO que proporciona a un familiar, amigo u otras personas… ¿Hace un seguimiento de algún indicador o síntoma de salud para alguna de las personas que cuida? {new}

1        Sí

2        No

8        (DO NOT READ) No sabe

9        (DO NOT READ) Se negó a contestar

ASK IF TRACK HEALTH FOR SELF OR OTHERS (Q24=1 OR Q25=1 OR CARE10=1)

Q26    Piense en el indicador de salud al que presta MÁS atención, ya sea para usted o para alguna otra persona, ¿cómo hace un seguimiento de los cambios? ¿Utiliza… [READ 1-6; ALLOW UP TO THREE RESPONSES] {new}

1        Papel, como un cuaderno o diario

2        Un programa de computación, como una hoja de cálculo

3        Un sitio web u otra herramienta en línea

4        Una aplicación u otra herramienta en su teléfono o dispositivo móvil

5        Un dispositivo médico, como un medidor de glucosa

6        ¿O simplemente hace un seguimiento mentalmente?

7        (DO NOT READ) Otro (ESPECIFIQUE)

8        (DO NOT READ) No sabe

9        (DO NOT READ) Se negó a contestar

And again, the summary of the Pew Research Center’s work in this area can be found here: Pew Internet: Health

/end of my reply/

Now, if you are a patient or caregiver, what questions would you like to be asked about your use of online health resources? What would you like to tell your clinicians about how you integrate information and communications technology into your daily life — or your pop-up medical emergencies?

If you are a clinician, do you include questions about internet use on your intake forms or in some other form? What do you ask about? What have you learned?

Please share in the comments below.